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Learn to ask: patient-generated health data, artificial intelligence, and the synthesis of care

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Learn to ask: patient-generated health data, artificial intelligence, and the synthesis of care

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Content Copyright 2025 Luke Fischbeck
LEARN TO ASK:
PATIENT-GENERATED HEALTH DATA, ARTIFICIAL
INTELLIGENCE, AND THE SYNTHESIS OF CARE
by
Luke Fischbeck
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(CINEMATIC ARTS (MEDIA ARTS AND PRACTICE))
May 2025

ii
TABLE OF CONTENTS
LIST OF FIGURES .................................................................................................................
ABSTRACT .............................................................................................................................
INTRODUCTION ....................................................................................................................
Overview ......................................................................................................................
Aim ..............................................................................................................................
Definitions ....................................................................................................................
Outline .........................................................................................................................
Discussion .....................................................................................................................
CHAPTER ONE: ANALYSIS HELPS US TO IMAGINE BETTER ......................................
We Are Scientific Because We Lack Subtlety ...............................................................
The Explanation of Life Seems to be its Melody .........................................................
The Shape of Capture ..................................................................................................
A Flowering Focus on a Distinct Infinity .....................................................................
The Rhythmic Work of Interpretation .........................................................................
What Kind of Learning? ..............................................................................................
Forms of Submission .....................................................................................................
Good Representations ..................................................................................................
Meaningful Analysis .....................................................................................................
Recommendations ........................................................................................................
CHAPTER TWO: THE VALIDATED INSTRUMENTS: A NARRATIVE REVIEW ...........
Background ..................................................................................................................
Objective ......................................................................................................................
Subject Matter .............................................................................................................
Methods ........................................................................................................................
Discussion .....................................................................................................................
Results ..........................................................................................................................
(Unanswered) Questions ...............................................................................................
Conclusion ....................................................................................................................
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Figures .........................................................................................................................
Bibliographic Notes .....................................................................................................
CHAPTER THREE: SELF-WRITING ..................................................................................
CHAPTER FOUR: SENTENCES ABOUT RIVERS AND CANCERS ................................
Discussion ....................................................................................................................
Work ............................................................................................................................
CHAPTER FIVE: FROM INFORMED CONSENT TO SHARED
DECISION MAKING .............................................................................................................
From Informed Consent… ............................................................................................
…to Shared Decision-Making .......................................................................................
Compression as Explanation .......................................................................................
Autonomy-in-Relation .................................................................................................
From Pattern Discrimination to Pattern Recognition .................................................
Minimal Assumptions ..................................................................................................
Conclusion: The Ends of Care .....................................................................................
CHAPTER SIX: THERE IS ALMOST NOT AN INTERVAL ...............................................
GLOSSARY ............................................................................................................................
REFERENCES .......................................................................................................................
APPENDICES ........................................................................................................................
APPENDIX A: THE VALIDATED INSTRUMENTS (SOURCES) ...........................
APPENDIX B: SENTENCES ABOUT RIVERS AND CANCERS (SOURCES) ......
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LIST OF FIGURES
Figure 1: Chimpanzee drawings ................................................................................................
Figure 2: Vines on mesh windows ............................................................................................
Figure 3: Chladni plate harmonics ...........................................................................................
Figure 4: Handwritten digits (MNIST) latent space interpolation ...........................................
Figure 5: Visual analogue scale (VAS) for the measurement of subjective pain .......................
Figure 6: Wong-Baker FACES pain rating scale .......................................................................
Figure 7: McGill pain questionnaire: What does your pain feel like? .......................................
Figure 8: McGill pain questionnaire: How does your pain change with time? ..........................
Figure 9: Two examples of the spectre aperiodic monotile .......................................................
Figure 10: Superimposition of two examples of the spectre aperiodic monotile ........................
Figure 11: Example tilings of the spectre aperiodic monotile ...................................................
Figure 12: A two-dimensional classifier ....................................................................................
Figure 13: Dimensionality reduction .........................................................................................
Figure 14: Thermal shadow ......................................................................................................
Figure 15: Texture mosaic (test pattern) .................................................................................
Figure 16: Texture mosaic (key pattern) ..................................................................................
Figure 17: Thematic Apperception Test (TAT) ......................................................................
Figure 18: Hypothetical AI-PROM flow diagram .....................................................................
Figure 19: Spiderweb snowflake ................................................................................................
Figure 20: Nonpoint Source #1 ................................................................................................
Figure 21: Nonpoint Source #2 ................................................................................................
Figure 22: Nonpoint Source #3 ................................................................................................
Figure 23: Nonpoint Source #4 ................................................................................................
Figure 24: Nonpoint Source #5 ................................................................................................
Figure 25: Nonpoint Source #6 ................................................................................................
Figure 26: Nonpoint Source #7 ................................................................................................
Figure 27: Nonpoint Source #8 ................................................................................................
Figure 28: Nonpoint Source #9 ................................................................................................
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Figure 29: Nonpoint Source #10 ..............................................................................................
Figure 30: Nonpoint Source #11 ..............................................................................................
Figure 31: Nonpoint Source #12 ..............................................................................................
Figure 32: Nonpoint Source #13 ..............................................................................................
Figure 33: Nonpoint Source #14 ..............................................................................................
Figure 34: Nonpoint Source #15 ..............................................................................................
Figure 35: Nonpoint Source #16 ..............................................................................................
Figure 36: Nonpoint Source #17 ..............................................................................................
Figure 37: Nonpoint Source #18 ..............................................................................................
Figure 38: Nonpoint Source #19 ..............................................................................................
Figure 39: Nonpoint Source #20 ..............................................................................................
Figure 40: Nonpoint Source #21 ..............................................................................................
Figure 41: Nonpoint Source #22 ..............................................................................................
Figure 42: Nonpoint Source #23 ..............................................................................................
Figure 43: Nonpoint Source #24 ..............................................................................................
Figure 44: Nonpoint Source #25 ..............................................................................................
Figure 45: Nonpoint Source #26 ..............................................................................................
Figure 46: Nonpoint Source #27 ..............................................................................................
Figure 47: Nonpoint Source #28 ..............................................................................................
Figure 48: Nonpoint Source #29 ..............................................................................................
Figure 49: I will look at things I don’t want to see ..................................................................
Figure 50: Exhibition layout diagram .......................................................................................
Figure 51: Installation view ......................................................................................................
Figure 52: Untitled Score, Violins ............................................................................................
Figure 53: Untitled (Playing Warm) ........................................................................................
Figure 54: Installation view ......................................................................................................
Figure 55: Sister Spell ..............................................................................................................
Figure 56: Alpha Dance ............................................................................................................
Figure 57: Untitled (Door) .......................................................................................................
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Figure 58: Untitled (Door) .......................................................................................................
Figure 59: Untitled (Door) .......................................................................................................
Figure 60: The Clearing ...........................................................................................................
Figure 61: Compasses ...............................................................................................................
Figure 62: Mouth to Mouth (still) ............................................................................................
Figure 63: Mouth to Mouth (card) ...........................................................................................
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ABSTRACT
[...]
Healthcare is both an intersubjective experience and an increasingly automated system for
making meaningful decisions on the basis of captured data. Two evolutionary tendencies in
healthcare technology indicate a trend towards drawing these disparate characteristics into closer
alignment, first: the arc initiated more than forty years ago by the shift from paper to electronic
health records (EHR), which continues apace with the introduction of artificial intelligence (AI);
and second: the use of patient-reported outcome measures (PROMs) as instruments for subjective, embodied, and context-rich measurement of patient experience. While the consequences
of this convergence have only begun to be studied from a clinical standpoint, this dissertation
seeks to understand the cultural and social ramifications of computational approaches to understanding patient experience, by placing large scale data analytics into a shared context with
the medical humanities and disability studies. To this end, three separate approaches are interleaved: First, an exploration of the possibilities for analysis as a precursor to imagination, centered on the use of patient-generated health data and AI. Second, a narrative review of technical
and scientific literature that addresses how PROMs and AI may be used together. The aim of
this review is to collect the various narratives that produce, and are produced by, this convergence. In sum, these narratives are seen to constitute a sociotechnical imaginary, or collective
sense of what is possible. The third method applies creative techniques—poetry, lyric essay, and
image-making—to highlight the need for artifacts to understand and navigate intersubjective
experience of both illness and technology.
Keywords:
Medical Humanities, Disability Studies, Critical AI Studies, Patient-Reported Outcomes,
Medical Technology: Social and Cultural Effects

1
INTRODUCTION
Overview
I am most struck by studies that show people survive more when they fill out surveys about how
they are feeling.1
[...]2
A visit to the clinic is filled with pointed questions, asked of the patient by no one in particular—a portal, a prompt, automated and oriented by compliance.
3
Questions about status, satisfaction, sadness, and work; about getting out of bed, lifting heavy objects, and how much of our
social life has been interrupted. Some questions recognize the specificity of our experience, while
others, misdirected, remind us that we are unrecognizable. What pattern could capture any of us
completely?
In my effort to explain the sensations of being a person inside of automated systems of capture,
I will refer to experiences which you, reader, may not share. This is ok: these gaps between us—
intervals—are the basis for my efforts, where shared experience resides as allegory, recognition,
and room to learn.4
There are three main axes for this dissertation:
1. Ethan Basch et al., “Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom
Monitoring During Routine Cancer Treatment,” JAMA 318, no. 2 (July 11, 2017): 197, https://doi.org/10.1001/
jama.2017.7156.; Fabrice Denis et al., “Two-Year Survival Comparing Web-Based Symptom Monitoring vs Routine Surveillance Following Treatment for Lung Cancer,” JAMA 321, no. 3 (January 22, 2019): 306, https://doi.
org/10.1001/jama.2018.18085.
2. Throughout this dissertation I use the sign [...] to indicate a momentary pause, a chance to step outside of the text.
As a figure that is unreadable, and typically represents the omission of text, indicating something unfinished, lost, or
yet-to-come, it also stands as a disruption to smooth coherence, a brain zap.
3. “The clinic” refers both to any specific clinic—the particular effects this site produces, its affordances, idiosyncrasies, habits, vibes, etc—and the clinic in the grand historical sense, whose transformational effects Foucault lays out in
Birth of the Clinic.
4. Intervals here could refer either to the distance between people with very different life experience, or to the changes
that occur over a lifetime (to speak not of being healthy but rather of being temporarily able-bodied…). Intervals
covers both the difference and the non-separability—our shared social, political, even biological configurations. For an
expanded study of the figure of intervals, see the chapter in this dissertation entitled “There is almost not an interval”

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1. Analysis and Imagination
2. Artificial Intelligence (AI) and Patient-Generated Health Data (PGHD)
3. Informed Consent and Shared Decision Making
Each of these axes represents a possible assemblage, or synthesis, of disparate approaches to
care.5 Analysis and imagination are necessary to each other: what we learn, combined with
what we know, helps us to confront what we think of as possible. The integration of automated
analysis and prediction (AI) with first-person testimony (PGHD) is enthusiastically promoted
as a means of easing the burden of disease by better understanding a patient’s experience in
context. At the same time, practical implementations continue to subordinate patient-centered
care to regimes of compliance, surveillance, efficiency, and the commodification of data. Because
of this, the integration of AI with PGHD risks harming the patient if not implemented ethically,
and with respect for the whole patient. As a cautionary aspect at the center of this integration,
informed consent practices fail to keep pace with changes in both technology and moral imagination. Shaped primarily by compliance requirements, informed consent practices can be insensitive to patient needs. This failure has motivated an embrace of shared decision making as an ethical approach to building trust and comprehension. However, both of these models are supported
by a set of assumptions about autonomy and dependence that continue to shape what is possible
in terms of policy, technology, and imagination.
Aim:
This dissertation examines how patients’ perspectives are, or will be, integrated into systematic
models of care, particularly in systems increasingly driven by predictive analytics, automation,
and artificial intelligence. The terms of this integration, as synthesis, must prioritize improving
5. The term assemblage is the imperfect, widely accepted translation of Deleuze and Guattari’s “agencement,” a term
used to refer to the continuous and active process of arranging heterogeneous elements to produce effects. Synthesis,
similarly, touches multiple disciplinary traditions, from political philosophy to chemistry to acoustics. I use the two
terms together with the aim of eliciting their multiple, process-oriented dimensions of meaning. For more on these
word choices, see the Glossary section of this dissertation.

3
patients’ lives, as it will have significant implications for the types of insights that analysis can
provide into the lived experience of illness.
I have assembled this research with an interdisciplinary curiosity and experimental spirit, in the
hope of opening numerous points of entry to the concepts which it explores. My aim is to present the research findings in ways that are relatable to those who have, as a patient or caregiver
contending with serious illness or disability, become entangled with medicalized technologies.
The thesis of this dissertation rests on the idea that there will be other ways of bringing patient
testimony and automated systems into contact, but patient perspectives are and will continue to
be critical for keeping safe and effective practices. It is further hoped that the questions addressed here will resonate closely with those whose expertise in patient-centered medicine—clinicians, researchers, patient advocates and policy makers—has led to similar lines of inquiry.
Definitions:
A number of key terms, pulled from multiple disciplines, have gained differing but complementary definitions through their use in distinct contexts over time. I’ve included a Glossary section to
trace word meanings as relevant to the subject matter at hand. To aid the reader, I will qualify
three fundamental distinctions below—varieties of AI, patient-generated health data as a category, and the use of terms to around disability, illness, and impairment.
Where I refer to artificial intelligence or AI throughout this dissertation, I am discussing contemporary connectionist or subsymbolic approaches to predictive pattern matching and inductive
inference: the patterns in a set of data are learned, in order to recognize the same patterns in
new data. Large language models (LLMs), for instance, train on vast amounts of language data
in order to perform novel tasks involving language generation, such as sentence completion.
Occasionally I will specify other flavors of AI, such as symbolic (rule-based and interpretable,
using predefined symbols to represent data), or chain-of-thought (CoT), which can make use of
transductive inference to reason through problems that are not easily solved by generalizing from
patterns, such as causal and consequential reasoning, planning and strategy, and ambiguous or

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context-sensitive problems from math word problems to ethics.
Patient-Generated Health Data (PGHD) refers broadly to any data created, recorded, or gathered by or from patients, family members, or other caregivers, including surveys, questionnaires,
health history, and device data. PGHD can be raw or mediated, solicited or passively recorded.
Patient-Reported Outcome Measures (PROMs) are standardized tools for the collection of a
specific kind of PGHD, Patient-Reported Outcomes (PROs): an individual’s symptoms, behaviors, or functional abilities, as perceived by the individual, obtained by directly asking them to
self-report. Importantly, PROs are raw data coming from the patient without interpretation;
PROMs can then be used to evaluate, normalize, and compare PRO data over time and across
populations.
Finally, it is critical to understand disability in terms of its social and political history, as a category, as an identity, and as a subject position entangled with medical, scientific, and legal systems. While the conditions that give rise to disability overlap conceptually and practically with
those of illness—as some illnesses may produce disability, some disabilities may produce illness—
the two terms are not interchangeable. Illness describes a particular person’s experience of a disease, condition, or symptoms, including biological, psychological, social, and economic outcomes.
Impairment describes limited function or capacity (physical, mental, sensory, social, and so on).
Importantly, impairment is a clinical description, and doesn’t necessarily imply disability in the
broader social or functional sense.
Outline:
There are three analysis sections, each takes a different path. There are two creative texts
(“Self-Writing” and “Sentences about rivers and cancers”). There are many illustrations. There is
a glossary. There is an exhibition text (“There is almost not an interval”).
The format of Chapter One: Analysis Helps Us to Imagine Better is prose analysis in the tradition of critical humanities. I draw on methodologies from literary theory and feminist science

5
and technology studies to produce a context-rich, non-representational study. The research questions for this chapter are: What are the possibilities for using analysis to assist with imagination? How do we define these terms? How do the shapes of analysis, and representation, restrict
what can be imagined or expressed?
In Chapter two: The Validated Instruments I take up the specific sociotechnical question of what
artificial intelligence (AI) technologies—including adjacent tools and techniques such as passive
data collection, ubiquitous computing and computerized adaptive testing (CAT)—integrated
with patient-reported outcome measures (PROMs) would do. Drawing exhaustively from recent
scientific literature, I aim to trace the underlying narrative assumptions motivating research
at the intersection of AI and PROMs, and to further trouble the foundational confusion set up
by using both patients’ lived experience and automated pattern matching as key endpoints for
research. The format of Chapter Two is a narrative review, on the subject of the integration of
artificial intelligence and patient-reported outcome measures. The research questions are: What
would an integration of artificial intelligence and patient-reported outcome measure (AI-PROM)
do? What questions are researchers pursuing this integration asking, to know they are on a good
path?
Chapter Three: Self-Writing is a lyric essay in the tradition of illness narratives. The thesis for
this chapter is that life-writing and visual art offer ways to distill overwhelming meaning within
the constraints of representational systems. As a result, a more complete, still unsettled statement about illness which shows the varying speeds and attentions of human beings with full
lives.
Chapter Four: Sentences About Rivers and Cancers takes a poetic form, with subject matter
that grew out of the research for this dissertation, accompanied by generative visual artwork.
The thesis for this chapter is that assembling a shared imaginary between rivers and cancers—
bodies and environment, illness and landscape—invites the reader to consider the ecological and
the personal together.

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Chapter Five: From Informed Consent to Shared Decision Making is the third analytical chapter, again in the disciplinary tradition of the critical humanities. The focus of this chaper is on
the following research questions: Given that one hope for the integration of AI and PROMs
is that it will provide patient-centered decision support, what are the underlying assumptions
about autonomy and dependence that define how decisions are made? What can a comparison
of informed consent and shared decision making teach us about emergent forms of autonomy,
relation, and expertise?
Chapter Six: There is Almost Not an Interval, in the shape of a group exhibition, was curated
with the thesis that an exhibition presents a novel and expansive way of approaching the research areas covered in this dissertation. In learning from artists whose work resonates with and
problematizes the dissertation’s themes, rigid investigative frameworks are exchanged for loose
coherence and multiplicity, with the hope of generating new lines of inquiry. This short chapter
contains a discussion of the exhibition theme of intervals in the context of this dissertation. Context and description for artworks in the program is also included.
Finally, a Glossary of terms used in the dissertation is included as a guide to the specific genealogies for the terms used throughout, as many have traveled across specialized disciplines.
Discussion:
This dissertation locates the role of synthesis in patient-centered care as an active integration of
multiple subjective views and mixed-method analyses, instruments, documents, records, artifacts
and interactions. Synthesis, as I have used the term here, is as an integral complement to analysis: bringing-together, breaking-apart. This is not synthesis in the dialectic sense, as conflict
between opposites, but synthesis as a re-articulation, of material processes that gain new identity when they are brought together—recognition through repetition.6
This is the synthesis that
6. Manuel DeLanda provides the following example of this kind of synthesis: “A rock like limestone or sandstone, for
example, is first articulated though a process of sedimentation (the slow gathering and sorting of the pebbles that are
the component parts of the rock). Then it is articulated a second time as the accumulated sediment is glued together
by a process of cementation.” (Quoted in Iris Van der Tuin and Rick Dolphijn, New Materialism: Interviews & Cartographies, Open Humanities Press, 2012, 39.)

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patients and caregivers navigating healthcare systems know well.
The synthesis of care, as framed by this dissertation, describes co-creative, patient-centered processes grounded in mutual consent. These processes are exemplified by clinical practices such as
shared decision-making and narrative medicine (see From Informed Consent to Shared Decision
Making and Self-Writing for discussion of these modalities).
The lines of inquiry opened here are used to anticipate the many ways health-related data
becomes insight, how it is reasoned and acted on by a range of actors, devices and processes
(patients, caregivers, healthcare providers, researchers, designers, insurers, software, databases,
diagnostic tools, and so on) and how agential participation figures in the process.
In order to advance this research alongside questions of power, accuracy, bias, and harm that are
unsettled and endemic to current applications of AI, I look to methodological traditions such as
diffractive analysis for preserving interpretability and the openness of meaning across contexts.
Diffractive analysis, which Donna Haraway describes as “the production of difference patterns in
the world, not just of the same reflected—displaced—elsewhere,” is inherently interdisciplinary
and intertextual, can include material experimentation, and sits well with notions of transductive
reasoning as a complement to inductive pattern-matching.
Throughout this study, imagination is a fundamental undercurrent: as sociological imagination—
the capacity to link individual experience with broader social processes—and as cultural imaginaries—the collective capacity to imagine what could be otherwise.
Central to this study are:
• The analytical frameworks of feminist science and technology studies, in particular those
whose research has illuminated (diffracted) the labor of maintaining categories, such as
Karen Barad, Donna Haraway, Susan Leigh Star, Lucy Suchman, Sheila Jasanoff and
Adele E. Clarke, among others.

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• Philosophical engagement with artificial intelligence, particularly humanist and posthumanist critiques of computational logics and machinic perception, as represented in the
critical work of Beatriz Fazi, Wendy Hui Kyong Chun, and Nora N. Khan, as well as the
engineering work of Melanie Mitchell, Francois Chollet and others: computational representation of embodied, social experience, tacit knowledge, and attendant techniques for
abstract reasoning, analysis and resynthesis.
• The work of scholars, advocates, and activists engaging with disability studies and crip
theory, particularly the work of Mia Mingus, Alison Kafer, Robert McRuer, Aimi Hamraie, Kelly Fritsch, and Eli Clare. provide critical tools for examining the myriad ways
that intersubjective experience of living with non-normative bodyminds are produced,
represented and mediated—in terms of time, duration, sequence, environment, behavior,
cognition, imagination, analysis, and so on.
• Life-writing as a core qualitative methodology for practices of narrative medicine and
medical anthropology, as outlined in the work of Cheryl Mattingly, Rita Charon, and
others.
• The role of patient experience and patient advocacy in the development of PROMs as
medical instruments, as well as the efforts to have the use of PROMs better integrated in
clinical research and care practices.
Patient-Reported Outcomes Measures (PROMs), as defined by the Food and Drug Administration, capture timely aspects of a patient’s experience of illness that come directly from the
patient, prior to any interpretation of the patient’s response by a clinician or anyone else.7
They
comprise active forms of patient-generated health data (PGHD), along with unstructured text
7. U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research, U.S. Department
of Health and Human Services FDA Center for Biologics Evaluation and Research, and U.S. Department of Health
and Human Services FDA Center for Devices and Radiological Health, “Guidance for Industry.”

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from clinical interviews or communication between patients and providers, and are distinct from
insights collected passively by fitness trackers and other personal devices. PROMs offer an object
of analysis that exemplifies broader shifts in the methods—and meaning—of health records as
they are acquired, aggregated, accessed, and interpreted. These shifts are acutely evident in the
ways patients, caregivers, clinicians, insurers and researchers come together around shared constructions of illness, disability, and quality of life.
Decades of systematic digitization and categorization of patient data, along with the emergence
of standardized application programming interfaces (APIs), have facilitated a system-wide tilt
towards so-called value-based care, in which health insurers seek to correlate costs with holistic,
patient-centered health outcomes. This correlation, along with decision support for clinicians and
patients alike, is facilitated by the advent of large-scale AI models pre-trained for adaptability to
novel tasks involving language and reasoning, fine-tuned to draw insights from PROM data.
My research, from a critical disability studies standpoint, considers the implications for patients’
quality of life of using AI as a mediating layer that solicits, interprets, reroutes, and reframes
patients’ direct testimony. Additionally, I broadly consider the concepts and assumptions guiding how technology is put to use in a clinical setting, with regard to decision making and patient-provider communication.
At every step, PROMs are treated as media objects for analysis, as mechanisms for mediating
experience that inevitably produce their own imprint on social and cultural life, as literacies,
behavioral patterns, anticipations, desires, and biases.
Finally, this dissertation is committed to the effective use of experimental, creative work for
putting critique into practice, by finding points of convergence across research disciplines, and
refining too-broad questions through attention to specific artifacts of experience.
One of the artists participating in the exhibition that supplements the dissertation text, Jjjjjerome Ellis, introduced me to a quote by the German Romantic polymath Novalis: “Jede Krank-

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heit ist ein musikalisches Problem, die Heilung eine musikalische Auflösung [Every illness is a
musical problem, the healing a musical resolution].”8
I’ve adopted this sentiment, removed from
its historical context, as a kind of permission to understand my own illness experience with all
the richness and ambiguity of music.
8. Novalis, Novalis Schriften, ed. Jakob Minor (Diederichs, 1907), 225: Ellis elaborates on this quote in their typographical performance score The Clearing.

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Fig. 1. Researchers provide an adult chimpanzee with four sheets of paper. Three of the sheets have
regular shapes printed on them (counterclockwise from the top right: dots forming a disc inscribed in a
triangle, dots forming two concentric triangles, dots forming a small square cross). The fourth sheet, at
bottom right, is blank. The chimpanzee, equipped with chalk, immediately adds markings to the paper in
what appears to be a coherent response to the printed shapes (e.g. filling them in, echoing or extending
their pattern). For the blank sheet, they add different kinds of controlled marks to the top edge, corners
and central area of the sheet, reinforcing the rectangle of the page.9
9. Thierry Lenain, Monkey Painting, (Reaktion Books, 1997), 67.
ANALYSIS HELPS US TO IMAGINE BETTER

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What follows is a statement about the shapes analysis may take, and how interacting with these
shapes might provide the conditions for better imagination. Along the way, it is a critique of
methods that insist on stability and optimization: fixing things. Facts, and points of view, are
always situated but they move and change and contradict because they are also animated. This
movement and change is sometimes narrative and it is sometimes playful, and it requests active
synthesis on the part of the reader.
The title of this chapter, Analysis Helps us to Imagine Better, can be broken down (deconstructed) into a sequence of problems: What is analysis? How should ideas of helping be framed? Who
takes part in the collective us, who is kept out, and how? What are imaginations, or imaginaries? How do we know better from worse, change from standing still?10
We Are Scientific Because We Lack Subtlety.11
I want to begin by describing the pleasure of receiving a diagnosis. Having your illness described
to you aligns the pleasure of reading with the bliss of writing.12 It offers enjoyment—not just as
a sensation, but as the assertion of rights or property, access or participation. Illness is a thing
you have and an activity you take part in, and this makes sense to others. For the person being
diagnosed, however, it grants the potential to attain something extra, real and unrepresentable.13
This is why I advocate for a kind of analysis that embraces inconsistency, contradiction, and the
interplay of multiple meanings.
10. Edouard Glissant, Poetics of Relation, trans. Betsy Wing (University of Michigan Press, 1997), 170: In Glissant’s
circular formulation, analysis is a relational intermediary between a totality, or something that can’t be divided into
primary elements (e.g. a culture, a person) and imagination, or, the form that helps us to grasp totality in its dynamic
motion of synthesis and genesis, making and becoming: “Analysis helps us to imagine better; the imaginary then helps
us to grasp the (not prime) elements of our totality.”
11. Roland Barthes, The Pleasure of the Text (New York: Hill and Wang, 1975), 61: Perhaps, a call for new scientific
methods that resist the lossiness of simplification, that preserve pluralities of interpretation?
12. Roland Barthes, The Pleasure of the Text, 4: Barthes identifies readerly and writerly pleasure as dialectically
linked, the reader enjoys participating in a putting-together, the writer enjoys stepping outside of their participatory
role in order to break apart symbolic regimes.
13. Hélène Cixous and Catherine Clément, The Newly Born Woman, trans. Betsy Wing (Univ. of Minnesota Press,
1986), 90: as for how to sustain these disparate impulses, Cixous and Clément’s account of feminine jouissance, by
invoking enjoyment in its sexual, political, and economic senses, links pleasure to creative power and imagination, as
a “way of self-constituting a subjectivity that splits apart without regret, and without this regretlessness being the
equivalent of dying.”

13
I am standing by the entrance of a big-box home improvement store looking at large metal enclosures. Boxes. The ear, nose and throat doctor who, a few days before, had used a hollow needle to take a sample from a lump on my neck, is on the phone. He describes to me the particular
type of cancerous tumor the cells from the sample had been classified as, and recommends that
I visit an oncologist as soon as possible to discuss next steps. At this moment, I am not deteriorating, moving from healthy to sick: I am getting information about lymphoma and how to live
with it. I am pausing for a moment.
“For those with the privileges of food, care, and physical support,” Mel Y. Chen writes, this
pause becomes “a meditation (if forced) on the conditions that underlie both illness and wellness,
that is, the biopoliticized animacies that foretell what may become of a changing body, human
or not, living or nonliving.”14
Predictions of impairment, or changed quality of life, are always already there, latent forms to
be actualized as a consequence of becoming recognizable to myself and others. Who are these
others? And what is becoming recognizable?
I will start with the second question:
I am reading Hannah Arendt looking for how she talks about life. “Human life,” she writes, can
be considered apart from biological life in the way it unfolds through speech and action, “the two
activities whose end result will always be a story with enough coherence to be told, no matter
how accidental or haphazard the single events and their causation may appear to be.”15 Biography, as the record of vital facts, is not important. What is important is how we become recognizable to one another, through mediated processes of mutual disclosure, and the evidence these
processes leave, their hopeful coherence.
14. Mel Y Chen, Animacies: Biopolitics, Racial Mattering, and Queer Affect. (Duke University Press, 2014), 20:
Chen’s phrase biopoliticized animacies refers, in shorthand, to the varying degrees of vitality, agency, and liveliness
that are assigned to beings, objects, or concepts within cultural, political, and linguistic contexts (animacies), subject
to forms of governance (biopolitics) that focus on managing and regulating life, evident in practices around healthcare, reproductive rights, birth and mortality, illness and disability, environmental health, etc. .
15. Hannah Arendt, The Human Condition, 2. ed., repr (Univ. of Chicago Press, 2006), 97.

14
Arendt begins the “Action” section of The Human Condition with a quote, in Latin, from Dante’s Monarchia:
Nam in omni actione principaliter intenditur ab agente, sive necessitate nature sive voluntarie agat, propriam similitudinem explicare. Unde fit quod omne agens, in quantum
huiusmodi, delectatur; quia, cum omne quod est appetat suum esse, ac in agendo agentis
esse quodammodo amplietur, sequitur de necessitate delectatio [...] Nichil igitur agit nisi
tale existens quale patiens fieri debet.16
Here I give my own loose translation (with delight):
In every action, the first intention of the person acting, whether out of necessity or by
choice, is to be actively recognized [to make their own image legible]. Everything that
acts, as an actor, finds delight in being active; since everything that exists desires its own
existence, and in acting this existence is somehow intensified, it is a delightful process.
Nothing acts unless—by acting—it opens itself up to being acted upon.
Dante pre-echoes my point, that there is pleasure (delight) in the act of putting inner experience
into a world, to encounter diagnosis, to make oneself recognizable. In fact, he writes, it is the
only reason for acting.
The closing sentence of Dante’s text, resistant to a singular translation, as Arendt acknowledges
in a footnote, is one piece of a larger story that explains our need for a “space of appearance,”
that is, an active forum of co-creation, where our latent selves come out—not a place where
objects are made, but a space for making (and maintaining) ourselves and our relations, acting
(expressing) and being acted upon (being recognized):
Without a space of appearance and without trusting in action and speech as a mode of
being together, neither the reality of one’s self, of one’s own identity, nor the reality of
the surrounding world can be established beyond doubt. The human sense of reality demands that [humans] actualize the sheer passive givenness of their being, not in order to
change it but in order to make articulate and call into full existence what otherwise they
would have to suffer passively anyhow.17
I read Dante’s early-14th century text about sovereign identity, and Arendt’s mid-20th century
16. Dante Alighieri, De Monarchia, trans. Aurelia Henry (Houghton, Mifflin and Company, 1904), Liber I, Capitulum
xii.
17. Arendt, The Human Condition, 175.

15
continuation of the thought, in terms of very contemporary crises of representation: how do we
now establish identity and reality beyond doubt? How do we, as patients, caregivers, researchers
and healthcare professionals, make what is latent (present, but not directly accessible) mutually recognizable? How do we keep pursuit of these goals from adding to patient and caregiver
burden?
Rough answers may be found in patient-reported outcome measures (PROMs) as validated
instruments, tools by which patients’ inner experience becomes empirical evidence, with minimal mediation. For artificial intelligence (AI), the questions may be considered together with
the mechanics of latent space, compressed representations that provide insight into how data are
related, their patterns and features, implicit or explicit.
The subject of this dissertation is the intersection of AI, as the automated prediction of patterns, with patients’ own testimony of their illness, in the validated form of specific PROM
instruments. I have selected this intersection because it seems to indicate an inflection point in
how different approaches to soliciting testimony (being asked to speak or authenticate oneself),
and providing analysis (whether in the particular modes of reasoning and information seeking
practiced by patients and caregivers, or in the automated extraction of features, generalized into
patterns to produce representations) may be seen to either reinforce or cancel each other, casting
notions of accuracy, objectivity, and intelligence into turbulent reconfiguration.
The consequences of this are far-reaching, and cut across disciplinary boundaries. While the subject matter of this dissertation is fixed on applications relevant to patient-centered healthcare,
I will take many walks outside to clear my head and enjoy my surroundings. To capture the
scene, I have chosen a peripatetic method characterized by Rosi Braidotti as the “figuration” of
a nomadic subject: “a style of thinking, occasionally autobiographical, which may at times strike
the readers as an epistemological stream-of-consciousness.”18 This thinking process is foundational to Braidotti’s posthumanist project, with its emphasis on intersectionality and environmental
18. Rosi Braidotti, Nomadic Subjects: Embodiment and Sexual Difference in Contemporary Feminist Theory (Columbia University Press, 1994), 1.

16
entanglements. Nomadism, for Braidotti, is “a politically informed account of an alternative subjectivity” that reconciles the simplification processes that constitute knowledge work with acute
awareness of life’s mutability and multiplicity.
[...]
For those of us who are sick, bioethicist David Leichter writes, illness may bring to the surface a
“play of dependence and difference between the body and the self,” along with a range of internal
and external stimuli that may be experienced as incoherent.19 In Leichter’s cautionary pushback
against the emergent uses of narrative in medicine, he insists on accommodation for what we
might call, using Braidotti’s phrase, alternative subjectivities. Stories, he writes, risk valorizing
“a specific model of the self” that tries to overwrite the ontological and phenomenological particularities of illness, disability, trauma, or neurodiversity, casting the patient as “an autonomous
agent who unfolds their authentic selves through the act of narration,” rather than meeting them
where they are.20
Retracing the literary theory-informed roots of narrative medicine, a counter-argument can be
made that shows how autobiographical stories do more than provide a matrix for re-constituting an idealized (ableist) version of self-identity. Instead, narrative is put to use as a technical
framework, providing a complementary path alongside and in conversation with measurement
and data-gathering. In this sense, narrative, and aesthetic forms more generally, do not work
by transferring a singular meaning, nor do they make themselves coherent to a narrow group of
readers alone. The goals of narrative medicine reflect this, by making space for shared attention,
recognition, affiliation, and trust—we meet in the text.21
The outcomes sought by narrative medicine, as Rita Charon writes, are not limited by prior
understandings of self or story, “deflecting attention away from the factual content of autobiog19. David J. Leichter, “Communication Breakdown: Probing the Limits of Narrative Medicine and Its Discontents,”
Social Philosophy Today 35 (2019): 65, https://doi.org/10.5840/socphiltoday201981263.
20. Leichter, “Communication Breakdown,” 67.
21. Elizabeth Lanphier, “Breaking Down Communication: Narrative Medicine and Its Distinctions.: A Reply to ‘Communication Breakdown: Probing the Limits of Narrative Medicine and Its Discontents’ by David J. Leichter.,” Social
Philosophy Today 37 (2021): 197, https://doi.org/10.5840/socphiltoday202181181.

17
raphy toward its performance content in the writing present” as contained by the autobiographical act itself.22 Seen this way, “narrative medicine is not beholden to a narrow set of capacities
to express oneself,” as Elizabeth Lanphier proposes, and instead offers the very tools to resist
and respond to epistemic harms that normative definitions of selfhood and agential subjectivity
carry.23
Working through this debate around the use of narrative in clinical practice begins by establishing shared space for the exchange of mutable information. By design, these spaces must anticipate, and accommodate for, diverse capacities (for remembering, interpreting, reasoning, articulating, expressing) and literacies (both technical and cultural).
[...]
The explanation of life seems to be its melody
Arendt placed another epigraph alongside the Dante quote, this from the Danish author Isak
Dinesen:
All sorrows can be borne if you put them into a story or tell a story about them.
In part because I want to know what “all sorrows” means exactly I trace the source of this quotation to its source, a 1957 New York TImes interview. I follow Dinesen as she continues:
To me, the explanation of life seems to be its melody, its pattern. And I feel in life such
an infinite, truly inconceivable fantasy.24
Melody is not a metaphor, it is a guide. “All melody is a series of attitudes,” Suzanne Langer
wrote, fifteen years before Dinesen’s interview took place.
22. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2006), 82.
23. Elizabeth Lanphier, “Narrative and Medicine: Premises, Practices, Pragmatism,” Perspectives in Biology and Medicine 64, no. 2 (2021): 224, https://doi.org/10.1353/pbm.2021.0013.
24. Bret Mohn, “Talk With Isak Dinesen,” New York Times, November 3, 1957, sec. T.

18
Thoughts and emotions are not represented by melody, but are carried along, in what Langer
names “a connotative relationship between music and subjective experience, a certain similarity
of logical form.”25 One is not the model of the other, there is no possibility of direct translation.
And yet the sensation is there, to be analyzed.
The fundamental relationships that give melodies their dynamic form are tension and release,
suspension and resolution. As a pattern in time, melody works through contrasts, shades, and
movements between differing events.
If the mechanics of melody are rooted in difference, it is “a non-binary conception of difference”
that is “‘not opposed to sameness, nor synonymous with separateness’,” in Karen Barad’s formulation, quoting Trinh T. Minh-Ha.26 This melodic, non-binary conception of difference should be
remembered as one possible shape of analysis.
I find resonance between Trinh T. Minh-Ha’s interrogation of difference as a constructive factor
of identity, and the fullness of Arendt’s concept of action. Continuing, in context, from where
Barad quotes Minh-Ha:
Difference as foreground in my film work is not opposed to sameness, nor synonymous
with separateness. Difference, in other words, does not necessarily give rise to separatism.
There are differences as well as similarities within the concept of difference. One can further say that difference is not what makes conflicts. It is beyond and alongside conflict.
[...] Many of us still hold on to the concept of difference not as a tool of creativity to
question multiple forms of repression and dominance, but as a tool of segregation.27
For Arendt, action is the setting of things into motion. It is the push or pull that begins the
process by which difference is put to use as an instrument of creative inquiry. With action, per
Arendt, we keep good relations: we forgive irreversible entanglements, we make commitments,
promises. We build—not in the sense of craft or architecture—we build trust: continuities and
stabilities. Action shows the plurality, uniqueness, and interdependence of human life.
25. Susanne K. Langer, Philosophy in a New Key, Sixth Printing (A Mentor Book, 1954), 184-185.
26. Karen Barad, “Diffracting Diffraction: Cutting Together-Apart,” Parallax 20, no. 3 (July 3, 2014), 170, https://
doi.org/10.1080/13534645.2014.927623.
27. Trinh T. Minh-ha, “Not You/Like You: PostColonial Women and the Interlocking Question of Identity and Difference,” Inscriptions 3–4 (1988).

19
To be the subject of analysis is in itself an action, a consenting-to. To throw analysis back, invoking opacity, as in Glissant’s use of the term, is similarly active.28 Opacity is strategic, re-routing analysis, reaffirming boundaries and limits.
If there is a split between being an agential actor, or being the passive object of life events—I
cause things to happen, or things happen to me—it is not a separating binary. As an experiment,
consider the figure of Spect-Actors in Brazilian theater director, organizer, and civil servant Augusto Boal’s Theater of the Oppressed as patients whose worlds are altered by diagnosis:
“The stage is a representation of the reality, a fiction. But the Spect-Actor is not fictional. [They] exist in the scene and outside of it, in a dual reality. By taking possession of
the stage in the fiction of the theatre [they] act: not just in the fiction, but also in [their]
social reality. By transforming fiction, [they are] transformed into [themselves].”29
In the social reality of the Theater of the Oppressed (and by analogy, the clinic), the performers’ gestures and emotions, what signifies and what is signified, are inseparable. The audience
are implicated in the performance, in what Boal refers to as “the multiple mirror of the gaze of
others.”30 This is intersubjectivity, the generative and non-separable difference between self and
other (audience and performer, patient and caregiver).
Other non-separating differences: private and disclosed experience, implicit and explicit expression. Constructs, in the psychometric use of the term, are how we make sense of internal worlds,
how we hold one person’s interior experience alongside that of others.31 What needs to change,
when the AI tools used to evaluate psychometric constructs can be said to have their own internal worlds? Researchers hoping to expand AI’s capacity for abstract reasoning look to psycho28. Édouard Glissant, “For Opacity,” in Poetics of Relation, trans. Betsy Wing (University of Michigan Press, 1997),
189–94.
29. Augusto Boal, Theatre of the Oppressed, New edition, Get Political 6 (Pluto Press, 2008), xxi.
30. Augusto Boal, Games for Actors and Non-Actors., trans. Adrian Jackson, Second Edition (Florence: Taylor and
Francis, 2005), 175.
31. Dennis Wixon, “Measuring Fun, Trust, Confidence, and Other Ethereal Constructs: It Isn’t That Hard,” Interactions 18, no. 6 (November 2011): 74, https://doi.org/10.1145/2029976.2029995: User experience researcher Dennis Wixon provides practical guidance for operationalizing such ethereal constructs as fun and trust—setting open
and objective measurements, and moving away from the black box of expert opinion. According to Wixon, tools for
measurement are essential not just for quantifying results, but for helping teams to work together. I read this in the
context of healthcare: if patients, caregivers, and healthcare providers agree in the constructs, we can better align on
the reasons for asking, the insights provided, and the actions to be taken.

20
metrics as a way to evaluate AI ability rather than skill.
32
[...]
Anamnesis, a term with roots in Platonic dialogues, is a telling of one’s innate knowledge.33 It
can be thought of as the prior knowledge we bring to new situations. In medicine, it refers specifically to a patient’s account of their health history, in their own words. In music theory, it is
the sensation of being (involuntarily) recalled to a prior situation or atmosphere through repetition of a melodic figure or theme.34
Anamnesis, another moment of diagnosis and pleasure:
In the spring of 1996 I had seizures, a feeling like being wrapped in sweetness, like spun sugar
covering my eyes, nose, and mouth. An ocean of sound, and falling.
In early summer a tumor the size of a walnut was removed from my brain.35 A low-grade tumor
made of both structural (glial) and functional (neuronal) cells, a ganglioglioma.
In late summer of that same year the Health Insurance Portability and Accountability Act,
known as HIPAA, became law. While HIPAA is now viewed almost exclusively through the lens
of compliance with data protection standards, the law’s initial provisions aimed to expand access
to healthcare and insurance, setting rules for how the insured move between providers in an
open market. For me, this was personal, as a person with a ‘preexisting condition’ (an invention
of the US insurance industry), HIPAA now offered some measure of protection against being
refused coverage outright, as if I were a woodland cabin in fire season.
32. François Chollet, “On the Measure of Intelligence,” arXiv:1911.01547 [Cs], November 25, 2019, http://arxiv.org/
abs/1911.01547: ableist AI is just around the corner.
33. Plato, “Meno,” trans. Benjamin Jowett, The Internet Classics Archive, 380 B.C.E., https://classics.mit.edu/Plato/
meno.html: ”there is no teaching, but only recollection”
34. Jean-Francois(Author) Augoyard and Henry Torgue, Sonic Experience: A Guide to Everyday Sounds (McGill-Queen’s University Press, 2005), 21.
35. While a surgeon and other operating room staff removed the tumor; in the medical record it is remembered in
passive voice as “was removed.” Among other reasons (liability, objectivity, etc) for this documentation practice of
using passive voice, this phrasing aims to place emphasis on the patient’s condition and outcomes, rather than the
actions of the healthcare provider.

21
You take your data with you. What container do you use?
“The natural, proper, fitting shape” for the traces my data makes may be a melody, or “that of
a sack, a bag” as Ursula K. Le Guin proposes in her “Carrier Bag Theory of Fiction.” Le Guin,
as a writer whose work was deeply steeped in anthropology, makes a powerful argument for
gathering and holding as the right metaphors to use when telling stories about stories: “A book
holds words. Words hold things. They bear meanings [...] holding things in a particular, powerful
relation to one another and to us.”36
[...]
Who are the others that analysis makes me recognizable to? What separates us, and what joins
us together?
We share time.
Experiences of illness, and the transformations they entail, “suggest a suspension of time (productivity time, social time),” Mel Y. Chen offers, in their study of animacy as a linguistic frame.
“‘Living through illness’” Chen continues, seems to “confound the narrativized, temporalized
imaginary of ‘one’s human life,’ for it can constitute an undesired stopping point that is sporadically animated by frenzied attempts (to the extent one’s energy permits) to resolve the abrupt
transformations of illness that often feel in some way ‘against life.’”37
Chen’s proposal, that the experience of living with illness produces its own radical temporalities,
travels well with notions of crip time, where, “rather than bend disabled bodies and minds to
meet the clock, crip time bends the clock to meet disabled bodies and minds.”38 A notion elaborated on by Allison Kafer, Margaret Price, Ellen Samuels, and others, crip time is characterized
36. Ursula K. Le Guin, The Carrier Bag Theory of Fiction, 1986, 3.
37. Chen, Animacies, 20.
38. Alison Kafer, Feminist, Queer, Crip (Indiana University Press, 2013), 27.

22
by non-linearity, flexibility, attentiveness, mourning, and interiority.39 Crip time draws from and
extends rich traditions of radically re-framing normative temporalities and futurities, particularly those of Queer Studies scholars like Jack Halberstam and Lee Edelman.40
We share an environment.
Subject to the porous interchange between environmental factors (toxicity, pollution, contamination) and social concepts of illness, disability, debt, and debility—an exchange Chen describes as
the “interabsorption of animate and inanimate bodies”—environmentally-linked health outcomes
trouble the “binary of ‘life’ and ‘nonlife’” while offering a different way “to conceive of relationality and intersubjective exchange.”41
This troubling is a necessary aspect of the stories we tell, and carries the power to dispel notions taking shape in both human-centered views of ecology and medicalized views of bodily and
mental health. To resist and repair the effects of shared injustices that “reshape and damage all
kinds of bodies—plant and animal, organic and inorganic, nonhuman and human,” as Eli Clare’s
study of parallels between environmental restoration and medical narratives of disability shows,
“inside this work, these stories, the concepts of unnatural and abnormal stop being useful.”42
We share a community of practice and action.
As the organized force of patient advocacy, the AIDS movement fundamentally transformed
how clinical research works, establishing patient and caregivers’ first-hand knowledge of the
effects of disease as “an alternative basis of expertise.”43 Steven Epstein’s excellent history of this
transformation, Impure Science: AIDS, Activism, and the Politics of Knowledge details in depth
39. Kafer, Feminist, Queer, Crip; Margaret Price, Mad at School: Rhetorics of Mental Disability and Academic Life,
Corporealities (University of Michigan Press, 2011); Ellen Samuels, “Six Ways of Looking at Crip Time,” Disability
Studies Quarterly 37, no. 3 (August 31, 2017), https://doi.org/10.18061/dsq.v37i3.5824.
40. Jack Halberstam, In a Queer Time and Place: Transgender Bodies, Subcultural Lives, Sexual Cultures (New York:
New York University Press, 2005); Lee Edelman, No Future: Queer Theory and the Death Drive, Series Q (Durham:
Duke University Press, 2004).
41. Chen, Animacies, 20.
42. Eli Clare, “Meditations on Natural Worlds, Disabled Bodies, and a Politics of Cure,” in Material Ecocriticism, ed.
Serenella Iovino and Serpil Oppermann (Indiana University Press, 2014), 210.
43. Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge, Medicine and Society (University
of California Press, 1996), 8.

23
how “activist participation has done nothing less than change the ground rules for the social
construction of belief—the varied processes by which different groups and institutions in society
come to believe that a given treatment is ‘promising’ or ‘disappointing,’ ‘effective’ or ‘junk.’”44
As patients, we each have our own heuristics, rules of thumb for tracing our present status and
our orientation towards what’s next, vectors that describe where we are and where we are going.
However, my life story has multiple authors. Social studies of patient advocacy, from AIDS to
Long Covid, show how understanding of illness moves “from patients, through various media, to
formal clinical and policy channels.”45 Where incoherent, inconclusive, or conflicting data may
forestall clinical interpretation, emplotment, or the imposition of narrative, can bring coherence
to disparate categories of evidence, as well as bring patients, caregivers, researchers, and policymakers into allignment. Studies that look at clinical research, drug development, and patient
advocacy side by side show how emplotment, as a shared heuristic, assembles facts into a common narrative structure so that patterns can be shown to cohere, context falls into place, and
illness can be made meaningful.46 Narrative can be open or closed, poetic or didactic, fulfilling a
purpose or dwelling with uncertainty. Importantly, plot can be used to bend discourse, and it is
to this end that patient advocates, corporate interests, and the relentless performance of compliance all intervene with the emplotment of clinical research and patient care.
[...]
Susan Griffin, in What Her Body Thought, recounts her own experience with Chronic Fatigue
Syndrome in dialogue with the historical narrative of Marie Duplessis, who died of Tuberculosis forty years before its etiology was known. By drawing a parallel between the two conditions,
poorly understood in terms of biological mechanisms in their respective historical moments,
Griffin reveals the underlying, non-medical aspects of disease, bringing the social contract that
44. Epstein, Impure Science, 35
45. Felicity Callard and Elisa Perego, “How and Why Patients Made Long Covid,” Social Science & Medicine (1982)
268 (January 2021), 113426, https://doi.org/10.1016/j.socscimed.2020.113426.
46. Cheryl Mattingly, “The Concept of Therapeutic ‘Emplotment,’” Social Science & Medicine 38, no. 6 (March
1994): 812, https://doi.org/10.1016/0277-9536(94)90153-8; Joseph Dumit, “Illnesses You Have to Fight to Get: Facts
as Forces in Uncertain, Emergent Illnesses,” Social Science & Medicine 62, no. 3 (February 2006), 578, https://doi.
org/10.1016/j.socscimed.2005.06.018.

24
governs illness and health into relief, in which “economy”—the collective forces that determine
who lives, who dies, who holds wealth, who takes pleasure—“is an extension of the body.”47
For those whose collection of symptoms lack the coherence of disease that is expected by the
medical community, sociopolitical factors are laid bare, putting notions of agency and interdependence into sharp relief. As Griffin writes, illness exposes “not just the whirling surface of
disparate destinies, but the rootedness of our connections. How the wound of being allowed to
suffer points to our need to meet one another at the deepest level [...] the giving and taking that
will weave a more spacious fabric of existence, communitas, community.”48
[...]
Disentangling self and other, past and present, is a non-trivial problem for the storyteller and
their audience alike. Wendy Chun, tracing how narratives are assembled in the wake of traumatic events, finds that: “Testimony is both an enabling and disabling violence. The intertwining of
experience that trauma demands means that testifying is not enough: we must also respond and
listen to others’ testimony so that the self does not take the place of the other.”49 We must preserve and articulate difference. This is where the work of making categories begins.
[...]
The Shape of Capture
I live in a house wrapped in wild vines (Vitis girdiana, or “Desert Wild Grape” and Passiflora
edulis or “Passion Fruit”). I have become familiar with the image of vines gripping the mesh of a
screen window, exploratory tendrils taking hold and pulling the grid into warped patterns with
the slow force of vegetal growth. I am also familiar with the image of these exploratory tendrils,
seen through a screen window, reaching and bobbing tenuously away from the window into open
47. Susan Griffin, What Her Body Thought (HarperCollins, 2011), 269.
48. Griffin, What Her Body Thought, 156-157.
49. Wendy Hui Kyong Chun, “Unbearable Witness: Toward a Politics of Listening,” Differences 11, no. 1 (May 1,
1999), 135, https://doi.org/10.1215/10407391-11-1-112.

25
Fig. 2. I imagine an image… that shows the visual distortion that happens when I see a vine through the mesh of a
screen window. I try to describe the influence of one part of an image on another: a screen’s grid breaking up the continuous curve of a vine. Image description: A grid of nine black and white images, each depicting a variation on the
theme of a grid interrupted and warped by a wild vine. Various scales and degrees of aesthetic realism are represented.

26
air, where the thin line of the vine appears to break into jagged steps as it crosses behind the
screen’s gridded mesh. This image of one pattern (the grid) failing to capture a second pattern
(the bobbing vine), is a common visual distortion known as aliasing, and is a well-known problem of many systems of representation: where there is capture, there will be loss. I’m not sure,
however, what to call the other image—that of the vines slowly pulling the screen into something less like a grid, more like a warped and bubbly mess. Nature? Arendt wrote that only
humans think of growth and decay, nature is just ongoing.50
I’ve seen it before, but I can’t quite hold an image of it in my mind, let alone create a good
representation of it: I am looking out through the mesh grid of a screen window, and I see the
smooth tendrils of a vine appear to break into a jagged stepped pattern. Is it a problem of needing to be in motion when viewing the scene? or of being able to focus on two planes at once?
There’s something phenomenological here, something about what makes experience and action
possible. It’s also a problem of sampling, an optical effect named aliasing: “the effect of different
signals, when sampled, becoming indistinguishable (aliases of one another) [...] the characteristic
distortion of images reconstructed from samples—an artifact of the difference between the continuous signal and the sampled image.”51 The grid of the screen forces a lower resolution onto the
curve of the vine. When it reaches my eye it has the shape of a city walk: block by block.
[...]
Ian White, artist, performer, critic, died of lymphoma in October 2013. This detail is significant
to me because I have the same disease, and because of the vague block I still experience trying
to understand how people die from it. I’ve researched it, I still can’t process it.
He wrote about performance, about action and time, and about cancer. On more than one occasion, he wrote about Robert Smithson’s allegorical treatment of entropy and irreversibility as a
child running circles in a box of white and black sand particles:
50. Arendt, The Human Condition, 97.
51. Sarah Rara, Alias, Video, 2018.

27
A sand box divided in half with black sand on one side and white sand on the other. We
take a child and have him run hundreds of times clockwise in the box until the sand gets
mixed and begins to turn grey; after that we have him run anti-clockwise, but the result
will not be a restoration of the original division but a greater degree of greyness.52
To solve this, to prevent this process by which “all systems spiral degeneratively into sameness,”
we need to move closer, to get that the grains, as individual quanta, are still black and white:
“the analogy only holds for as long as we occupy a fixed position of inviolable, immaterial perception. ‘Greyness’ is the impression of colour from a fixed perspective.”53
A shift in perspective, getting really close to what you’re studying is one option, the other is becoming alien to the conditions that bring you into contact with it, moving to different grounds.
Sylvia Wynter identifies this place as demonic ground, outside of prior, subjugating categories,
“a frame of reference which parallels the ‘demonic models’ posited by physicists who seek to
conceive of a vantage point outside the space-time orientation of the humuncular observer [...]
outside the ‘consolidated field’ of our present mode of being/feeling/knowing, as well as of the
multiple discourses, their regulatory systems of meaning and interpretative ‘readings.’”54
I’m puzzling over what White characterizes as the double negative of cancer treatment: “something to do, being done.”55 Even in the distress of treatment, in the topos of cancer-filled life, just
doing a thing, or saying a word, carries the benefits of self-efficacy, adherence to a routine, and
other cascades of self-healing. There are other significant effects to this though, where action
produces knowledge and recognition. This, ideally, is what filling out a form does.
Taking on the phenomenology of language, Maurice Merleau-Ponty obsesses on the boundary
between thought and speech, and finds ability as the catalyst: “My spoken words surprise me [...]
52. Robert Smithson, “The Monuments of Passaic,” Artforum, December 1, 1967.
53. Ian White, “Removing the Minus,” Lives of Performers (blog), November 22, 2012, https://livesofperformers.
wordpress.com/2012/11/22/removing-the-minus/: the “degenerative spiral into sameness” white describes could be understood as an embodied experience of what is known in statistics as regression to the mean: when an extreme value
is observed in a random distribution, subsequent independent measurements are likely to reflect less extreme variation
and be closer to the average, due to random variability.
54. Sylvia Wynter, “Afterword: Beyond Miranda’s Meanings: Un/Silencing the ‘Demonic Ground’ of Caliban’s ‘Woman,’” in Out of the Kumbla: Caribbean Women and Literature, ed. Carol Boyce Davies and Elaine Savory Fido (Africa
World Press, 1990), 364.
55. White, “Removing the Minus.”

28
and teach me my thoughts. Organized signs have their immanent meaning, which does not arise
from the ‘I think’ but from the ‘I am able to.’”56 I slide this thought next to political / relational
theories of disability, such as those advanced by Alison Kafer and others, in which disability and
ability mutually define each other through social and ideological patterns.57 Conventions of what
ability and disability mean arrive even before thought.
The number of times Ian White wrote: “What do I know.”
He knew that institutions—museums, for instance—subtract time from objects, preserving them
indefinitely in reverent stillness. That is to say, they subtract life. Analysis can, and often does
take this approach. Alternatively, respecting its objects’ animacy, analysis may include their
movement in its model, or reanimate them: “If objects that ordinarily are removed from time can
have time introduced to them (again) for their own erasure, and this is political, so might the
opposite be: a thrown voice or subjects subjected to something like architecture, a split.”58
This something like a split, like the split between subject and object, is where analysis takes
place, a site elaborated on by so many scholars: by Karen Barad in their term agential cut, by
Donna Haraway as partial knowledges, Fred Moten as in the break, or Christina Sharpe as wake,
to name just a few of the ideas that I have carried with me about how, where, and when to do
analysis.
[...]
How does anything I know help me? Lauren Berlant also died of cancer, a different type: leiomyosarcoma. Her version of a split may have been an opening up to the inconvenience of attachment and dependency, where “to queer something doesn’t mean just to stick an antinormative
needle into it, but to open up a vein to unpredicted and nonsovereign infusions.”59
56. Maurice Merleau-Ponty, Signs, 6. print, Northwestern University Studies in Phenomenology and Existential Philosophy (Northwestern Univ. Pr, 1978), 88.
57. Kafer, Feminist, Queer, Crip, 6.
58. Ian White, “Epigraph,” in Rereading Appropriation: Edition V - Appropriation and Dedication, ed. Tanja Baudoin
et al., Idea Books (If I Can’t Dance, I Don’t Want To Be Part of Your Revolution, 2015), 14.
59. Lauren Berlant, On the Inconvenience of Other People, (Duke University Press, 2022), 16.

29
Fig. 3. Two-dimensional plate harmonic series as visualized by acoustician Ernst Chladni.60 Image description: A grid
of squares appear hand-drawn in thin white lines on a black background. Thin white line drawings divide each square
into a unique pattern, from a simple cross shape in the top left corner, each square appears progressively more complex when moving across the grid, introducing curves, diamonds, star shapes and looping figures.
60. Ernst Chladni, Neue Beyträge Zur Akustik (Breitkopf & Härtel, 1817), 111.

30
The other face of analysis is synthesis: the generative and unfixed process of assembling or bringing elements together in a mixture; a composition. In Vivian Sobchack’s model of embodiment
and cinema, meaning and value emerge from “the synthesis of the experience’s subjective and
objective aspects”—what you see and what you know.61 Synthesis, following this agential and
situated logic, is as a completment to Karen Barad’s call for diffractive, rather than reflexive,
analysis of tools, one premised on working the entanglements of categories, frames, subjects, and
objects—to keep traces of the paths taken, the materials touched, and the shapes of containers
used to capture worlds.62
[...]
A hand pulls a violin bow across the edge of a square metal plate to produce an audible tone. As
the hand applies increased pressure and varies the angle at which the bow meets the metal, the
tone jumps from a low fundamental, through a series of higher-pitched harmonic tones. Grains of
fine sand bristle and migrate haphazardly as each new tone resonates across the surface, snapping into quick formations along the nodes of a two-dimensional standing wave. Visual patterns
form precisely in those areas where vibration is at a standstill, even as the rest of the metal
quivers freely.
If you watch the movement of material like fine sand on a Chladni plate you know the uncanny
twitching between harmonic patterns as one steady state transitions into another.
I provide this example, and the ones that follow, to think with as examples of movement constrained by models—abstract representations that try to capture what is meaningful about a
thing. Moving between an original and its model, or even between an image and its description,
shows the shape of capture: what is preserved as meaningful, what is distorted or simplified, and
what is discarded.
61. Vivian Carol Sobchack, Carnal Thoughts: Embodiment and Moving Image Culture (University of California Press,
2004), 2.
62. Karen Barad, Meeting the Universe Halfway (Duke University Press, 2007), 30.

31
Fig. 4. Sampling across the latent space of a learned representation of handwritten digits from the Modified National Institute of Standards and Technology (MNIST) database. This figure illustrates how
“human concepts as thickness, orientation, and digit-specific traits vary smoothly between samples,
signaling the latent space effectively captures factors of variation in the data.”63 Image description: A grid
of handwritten white numbers (digits) centered on a black background. Reading across, down, or diagonally through the grid, the digits slowly change, such that each location of the grid shows a digit that is
distinctly recognizable as a particular number (6, 4, 2, 0, etc), but bears increasing resemblance to some
number further along in that direction.
63. Lucas Pinheiro Cinelli et al., Variational Methods for Machine Learning with Applications to Deep Networks
(Springer International Publishing, 2021), 136, https://doi.org/10.1007/978-3-030-70679-1.

32
More specifically, these models are manifolds, constrained, continuous spaces that hold representations so we can understand their patterns better. Latent space, in the context of AI models, is
described as a manifold, flattening complex worlds into an apprehendable space. Think of constellations in the night sky: the depth of time and space flattened into figures, nodes and edges,
named as shapes, telling us ancient stories.
Constraints can be: spectral (an auto-tuned voice striding on intervals), spatial (as tiles arranged
to fill a space), temporal (play between waves crashing at the shoreline), semantic (“rose is a rose
is a rose is a rose”).64
Speaking generally, the constraints of a manifold produce a movement like resonance, or a habit:
following the contours of the latent space, guiding expressions along the rails of features and
relations. Whatever you do, the end result will always be a story coherent enough to be told.
Categories divide a continuous space into its harmonics, its areas of motion and its areas of stillness. They guide action into recognizable gestures.
The Wong-Baker FACES Pain Rating Scale was developed by pediatric healthcare professionals
Donna Wong and Connie Baker between 1981 and 1983. Working with patients at the Hillcrest
Medical Center in Tulsa Oklahoma, Wong and Baker enlisted the children’s participation in designing a tool that could meet the twin goals of making it easier for pediatric patients to assess
their own pain, and to help adult caregivers to comprehend (believe, even) that self-reported
pain of children.
To complete the test, patients select the face that they feel best expresses the intensity of their
pain. The cartoon expressions appear at first to flatten the complexity of subjective pain experience. As a momentary assessment, it doesn’t capture continuity: changes, memories, and anticipations that contribute to what is felt in the instant of questioning. It doesn’t distinguish between the overlapping and inter-relating physical sensations that produce the wholeness of pain,
64. Gertrude Stein, “Sacred Emily,” in Complete Works of Gertrude Stein (Delphi Classics, 2017), 3329.

33
Fig. 5. The Visual Analog Scale (VAS) measures aspects of subjective pain experience (intensity, affective quality) by
placing a mark along a linear, continuous line.65 Image description: a thin horizontal white line stretches across most
of the image, against a black background. Each end of the line terminates in a square. Above the squares are text
labels—on the left: “No Pain” and on the right: “Worst Pain Imaginable”
Fig. 6. Wong-Baker FACES® Pain Rating Scale. Image description: A horizontal row of five line-drawn cartoon faces.
On the far left, the face appears to be smiling. Moving from left to right the faces appear to express progressively
worsening moods. The centermost faces appear more neutral, with a flat line for a mouth, neither smiling nor frowning. The face on the far right appears to be weeping, with a sharply downturned mouth and furrowed brow.
65. Donald D. Price et al., “The Validation of Visual Analogue Scales as Ratio Scale Measures for Chronic and Experimental Pain,” Pain 17, no. 1 (September 1983) 46, https://doi.org/10.1016/0304-3959(83)90126-4.

34
nor does it separate social, psychological, and biological factors. It is only recently that research
has shown that the faces are not in fact measuring a fear of questions.66 However, as an instrument created in cooperation with children, for children, the faces are a model of how to design
analytical tools that are accessible and adaptable, with the diverse needs of individual patients
at the center.67
The McGIll Pain Questionnaire (MPQ), validated in the 1970’s as an instrument for the self-reporting of subject pain experience, establishes linguistic categories of sensation, affect, and
evaluation in order to better understand patterns in both the intensity and the qualities of pain
over time. The McGill Pain Questionnaire, and its short-form version (SF-MPQ) are widely used
in research and clinical medicine fifty years after it was first made available. Even recent applications of artificial intelligence in pain research tend to focus on the same problems of describing
and classifying, rather than diagnosing and managing, patients’ pain.68
[...]
Language is changing, local, and variable. For us to be comprehensible to one another, we try to
move in the shape of a shared language, adapting to shared settings and needs, pockets of understanding. This is not always possible or desirable: description is a kind of translation that cuts
across local variations in language to make an object or experience accessible in a different way.
Like speaking poetically about an artwork, description should preserve interpretability (making
a latent image understandable), even as it troubles notions of objectivity.69
I type out each word on the questionnaire in the image descriptions above, to assist screen
readers in deciphering the images, to put a finer point on the limited accessibility of text-based
surveys, and as a kind of litany: considering each word in turn, I compare the meaning it
66. Gregory Garra et al., “The Wong-Baker Pain FACES Scale Measures Pain, Not Fear,” Pediatric Emergency Care
29, no. 1 (January 2013), 17, https://doi.org/10.1097/PEC.0b013e31827b2299.
67. “History of the Wong-Baker FACES® Pain Rating Scale,” Wong-Baker FACES Foundation, accessed June 14,
2024, https://wongbakerfaces.org/us/wong-baker-faces-history/; Donna Lee Wong and Connie Morain Baker, “Pain in
Children: Comparison of Assessment Scales,” Pediatric Nursing 14, no. 1 (February 1988).
68. Jagadesh N Nagireddi et al., “The Analysis of Pain Research through the Lens of Artificial Intelligence and Machine Learning,” Pain Physician, 2022, E236.
69. Bojana Coklyat and Shannon Finnegan, “Alt-Text as Poetry Workbook,” 2020.

35
Fig 7. The McGill Pain Questionnaire (1975). Image description: a printed page with a prompt in large, underlined,
bold type at the top right: “What Does Your Pain Feel Like?” Instructions are below the prompt, in a block of smaller
text centered horizontally on the page: “Some of the words below describe your present pain. Circle ONLY those
words that best describe it. Leave out any category that is not suitable. Use only a single word in each appropriate
category—the one that applies best.” Descriptive categories are arranged in a grid that fills up most of the page: “1.
Flickering / Quivering / Pulsing / Throbbing / Beating / Pounding 2. Jumping / Flashing / Shooting 3. Pricking
/ Boring / Drilling / Stabbing / Lancinating 4. Sharp / Cutting / Lacerating 5. Pinching / Gnawing / Cramping
/ Crushing 6. Tugging Pulling Wrenching 7. Hot / Burning / Scalding / Searing 8. Tingling / Itchy / Smarting /
Stinging 9. Dull / Sore / Hurting / Aching / Heavy 10. Tender / Taut / Rasping / Splitting 11. Tiring / Exhausting
12. Sickening / Suffocating 13. Fearful / Frightful / Terrifying 14. Punishing / Gruelling / Cruel / Vicious / Killing
15. Wretched / Blinding 16. Annoying / Troublesome / Miserable / Intense / Unbearable 17. Spreading / Radiating /
Penetrating / Piercing 18. Tight / Numb / Drawing / Squeezing / Tearing 19. Cool / Cold / Freezing 20. Nagging /
Nauseating / Agonizing / Dreadful / Torturing”

36
Fig. 8. The McGill Pain Questionnaire (1975). Image description: a printed page with a prompt in large, underlined, bold type at the top right: “How Does Your Pain Change With Time?” Instructions are below in a smaller
type, centered horizontally on the page: “Which word or words would you use to describe the pattern of your pain?
Descriptive categories are arranged in a row below, centered horizontally on the page. “1. Continuous / Steady /
Constant 2. Rhythmic / Periodic / Intermittent 3. Brief / Momentary / Transient”

37
activates in my mind with what I recognize about myself in that moment. The important thing
is to remember why I collect data in the first place. I wait for a pattern to click into place.
This questionnaire is not a diagnostic tool, it is an intervention. As an experience, it pries open
a pocket of suspension, stepping out to check my orientation, tendencies, and affinities. It does
not rely on accuracy or precision in a biological or linguistic sense. The meaning of words, physical sensations, and affects are all permitted to flicker. It accomplishes a more important task
as an instrument for communicating, from patient to provider, what is meaningful about their
treatment:
Some of these words are undoubtedly synonyms, others seem to be synonymous but vary
in intensity, while many provide subtle differences or nuances (despite their similarities)
that may be of importance to a patient who is trying desperately to communicate to a
physician.
70
A flowering focus on a distinct infinity
No continuous space is without these pockets of suspension, and no division of continuous space
into a harmonic series fully captures the anxiety of hovering outside of, or along the edge of a
category.
[...]
“Form does not necessarily achieve closure, nor does raw materiality provide openness,” the poet
Lyn Hejinian writes. It is through the construction of ‘open’ forms (approaches to making and
writing that aim to preserve multiplicity in their experience and interpretation, for example)
that the specificity of concrete, material, life is made accessible, as “a flowering focus on a distinct infinity.”71
70. Ronald Melzack, “The McGill Pain Questionnaire: Major Properties and Scoring Methods,” Pain 1, no. 3 (September 1975), 278, https://doi.org/10.1016/0304-3959(75)90044-5. [italics mine]
71. Lyn Hejinian, “The Rejection of Closure,” in The Language of Inquiry (University of California Press, 2000), 42.

38
“Is there something about the world that demands openness?” Hejinian prompts us: “Is there
something in language that compels and implements the rejection of closure?”
Maybe a rhetorical question, but there are reflexive critiques to be made. There is something in
language that rejects closure, but who’s language is this? “Settler colonial knowledge is premised
on frontiers” and “the felt entitlement to transgress these limits,” Eve Tuck and K. Wayne Yang
spell out in R-Words, Refusing Research.72
Drawing a critical frame around how sensitive knowledge is solicited from populations that have
been traditionally excluded from participation in research, Tuck and Yang interrogate damage-centered narratives as a primary axiom of social science research, where “the subaltern can
speak, but is only invited to speak her/our pain”73 The authors turn to bell hooks, who animates
the power gradient that threatens to bind researcher and subject:
No need to hear your voice when I can talk about you better than you can speak about
yourself. No need to hear your voice. Only tell me about your pain. I want to know your
story. And then I will tell it back to you in a new way. Tell it back to you in such a way
that it has become mine, my own. Re-writing you I write myself anew.74
[...]
What direction does knowledge flow—who does it benefit? Who sets the terms for the gathering
and sharing of knowledge? Who is outside looking in? These questions have as much to do with
the arrangement of sociotechnical practices as they do with notions of what is possible or desirable—what can and can’t be known.
In mathematics, incommensurable refers to two quantities that don’t share a common measure
or standard. They can’t be expressed as a ratio, they can’t be compared: “Incommensurability,”
Beatrice Fazi writes, does not mean something “cannot be interpreted (that is, be made intelligi72. Eve Tuck and K Wayne Yang, “R-Words: Refusing Research,” in Humanizing Research: Decolonizing Qualitative
Inquiry with Youth and Communities, ed. Django Paris and Maisha T. Winn (1 Oliver’s Yard, 55 City Road London
EC1Y 1SP: SAGE Publications, Inc., 2014), 225, https://doi.org/10.4135/9781544329611.
73. Tuck and Yang, “R-Words: Refusing Research,” 224.
74. bell hooks, “Marginality as a Site of Resistance,” in Out There: Marginalization and Contemporary Cultures, ed.
Russell Ferguson et al., 6. print, Documentary Sources in Contemporary Art 4 (MIT Press, 1999), 341.

39
ble); rather, it means that it cannot be translated, as it has no equivalent.”75
An example that sticks in my mind: hope is incommensurable with reality. There’s a limit to
how well actuality can be translated into virtuality, and vice versa. This is particularly evident
in what has been referred to in the social studies of science as the interaction between regimes of
truth and regimes of hope: one seeks closure, the other, endless possibility. As exercises in power,
one imposes the conditions of bare life, the other, open-ended self-improvement.76
The knowledge and expertise we derive from our specific experiences can be thought of as, at
times, incommensurable with that of others. Don’t even try to explain. When speaking across
gradients of power and vulnerability, such as between patients and providers, it is important
to acknowledge how incommensurability affects our capacity for mutual recognition, even as it
cathects us to one another as witnesses. My oncologist warned: I cannot tell you what cancer
treatment is like because I haven’t tried it myself.
I recognize fatigue in the way he acknowledged his limits—not of the body but of action and
speech, of deciding what to say and how to say it, of the unending work of drawing out what is
latent.
Assumptions about data that forget fatigue eventually hit hard limits.77 Shaped by setting, duration, resources, language, our lived experience, the tools and actions available to us, the amount
of energy and attention we have in reserve, there are uncountable ways a question can be unanswerable, and a decision can be undecidable.
This is as true for very abstract, general problems as it is for very concrete problems, including
those indicated by material, mechanical, or social relations, what a body can do, or what one
75. M. Beatrice Fazi, “Beyond Human: Deep Learning, Explainability and Representation,” Theory, Culture & Society
38, no. 7–8 (December 1, 2021), 70, https://doi.org/10.1177/0263276420966386.
76. Tiago Moreira and Paolo Palladino, “Between Truth and Hope: On Parkinson’s Disease, Neurotransplantation and the Production of the ‘Self,’” History of the Human Sciences 18, no. 3 (August 1, 2005): 55, https://
doi.org/10.1177/0952695105059306.
77. Navigating these limits is a critical role performed by a doula, social worker, or caregiver, who re- serves their own energy in order to advocate for the exhausted patient, in concert with the overex- tended healthcare provider. I’m saying patient data needs a doula.

40
person is comfortable disclosing about themselves to another: A survey doesn’t produce insight if
the subjects are too exhausted or alienated to answer questions right now.
Automation carries its own limits: there are limits to the kinds of problems that can be solved
optimally with automated processes, just as there are limits to what problems are ethical to
solve with automation. And then there are limits to what kinds of problems can be computed at
all. In studies of computation, these often break down into problems where we can’t say for sure
whether a program will ever stop (the halting problem), and problems where we can’t decide
whether a statement is true or false (the entscheidungsproblem, or decision problem).
Another, urgent way of framing the question of computability: can all patterns be predicted?
Particular unanswerable (or undecidable, or uncomputable) questions exemplify situations that
we may be able to feel our way through as experiences (from up close or far away) but—encountering the limitations just mentioned—there is no possibility for informed decision making. We
can’t model it or interpret it. It’s beyond us.
I’m thinking, for example, about an example of undecidability known as the domino problem,
illustrated using patterned or shaped tiles.78 The question is: given any random set of tiles, can
they be made to fit together, matching edge to edge with no gaps, to fill any random space? The
answer to this can be ‘yes’ or ‘no’ as long as every set of tiles eventually conforms to a repeating
pattern. Yes: the pattern made by these tiles repeats perfectly to fit the limits of the space. No:
these tiles won’t fit that room, their pattern is too big.
In this problem, things become undecidable when we get that there are in fact some kinds of
tiles that can fill an infinite space without ever making a pattern that repeats: aperiodic tiles.
Since the answer to the domino question for these specific tiles is neither yes nor no, the domino
question is shown to be uncomputable. The existence of these shapes breaks the computability
78. Emmanuel Jeandel and Pascal Vanier, “The Undecidability of the Domino Problem,” in Substitution and Tiling
Dynamics: Introduction to Self-Inducing Structures, ed. Shigeki Akiyama and Pierre Arnoux, vol. 2273, Lecture Notes
in Mathematics (Springer International Publishing, 2020), 293, https://doi.org/10.1007/978-3-030-57666-0_6.

41
Fig. 9. Two versions of a type of shape that only makes non-repeating (aperiodic) patterns when tiled, not requiring
reflective translations (flipping).79 Because its tilings have no reflections, researchers have named it spectre. This is the
only type of shape known to have this aperiodic quality. Image description: Two similar but distinctly different shapes,
consisting of a number of curved edges and sharp vertices, drawn as white outlines on a black background.
Fig. 10. The two versions of the spectre shape, superimposed to show their shared underlying form. Both shapes
have the same arrangement of nodes, while each has its own variation of an S-curve forming the edges. I look at the
previous figure, and then back, going back and forth between considering the shapes as unique, and of a shared type.
Image description: superimposition of the two shapes from the previous figure, with opacity adjusted so the differences are evident. Each node aligns exactly, while the curved edges are inverted, producing a squiggly, roughly circular
double helix, like a necklace or a protein.
79. David Smith et al., “A Chiral Aperiodic Monotile” (arXiv, May 28, 2023), http://arxiv.org/abs/2305.17743.

42
Fig. 11. Two ‘supertiles’ in which spectre shapes are placed into a tiled pattern. The only actions needed to make a
non-repeating pattern are to rotate and slide the shapes up and down, or side to side, then place them edge to edge
with one-another. Arranging these tiles by hand helps me to understand that there are still principles in place that
guide what I do and how it feels to do it. Not a constraint so much as the sensations of ease or resistance. This can
feel like fitting pieces together in a puzzle.

43
of the problem.
I think there is something mystical embedded in these shapes, fixed distributions of nodes connected by alternating concave and convex curves that suggest a rotational energy or instability—
the power to break questions. I trace them, feeling how their edges force decisions about how
they should be fit, placed, or rotated into tumor-like patterns.
This is not the only way to distinguish between computable and uncomputable versions of this
particular question. New conditions change the outcome: Are we permitted to know in advance
where and how the first tile will be placed? Are we permitted to not only rotate and shift, but
reflect, warp, or scale the tiles as we arrange them? How many different shapes or patterns does
the set of tiles contain?
With these modifications, a wider variety of shapes can produce non-repeating patterns. When
there are less available actions, the possibility of a set of shapes that can produce non-repeating
patterns vanishes, and the question becomes computable again.
Computational approaches to prediction embed a conditional logic in the questions at hand: act,
if a condition is met, with the requirement to be specific, legible, and exact. Uncertainty and
immeasurability belong to another domain.
Patient-reported outcomes (PROs), as subjective reports of interior experience, produce categories with fuzzy boundaries that require ongoing maintenance to ensure meaningful interpretation.
[...]
The work of manipulating evidence through categories and interpretations to become meaning
faces a number of challenges and critiques. Traditionally, research has approached this work with
the aid of models, whether rational systems placed between observer and the object of study, as
with traditional statistics, or emerging through analysis, as with AI and machine learning tech-

44
Fig. 12. This is political. Diagram of a two-dimensional classifier that has learned a boundary between
classes. Image description: an array of gray dots on a black background are crossed by a thin white line
running diagonally from bottom left to bottom right. Some dots fall above the line, others under. Still oth- ers are touched by the line itself.

45
niques.
To address the lived experiences, interactions, and affective dimensions that may not be easily
captured by traditional forms of representation, disparate contemporary research disciplines,
spanning philosophy, art, performance, and social science have taken issue with model-based,
representation-driven approaches to meaning-making.
Bundled together as non-representational, post-qualitative, or more-than-representational, these
research methodologies share the position that the work of research is not just to hold a mirror
to an external reality, but to engage with the complexities and multiplicities of human-environment interactions, embodied experiences, and the relational nature of knowledge production:
“how material, sensory and affective processes combine with conscious thought and agency in the
making of everyday life.”80
In this focus on assemblage and movement, non-representational research challenges stable
identities, hierarchies, and boundaries, even patterns, emphasizing instead the fluidity, contingency, and relationality of social and material phenomena. Departing from notions of biography,
non-representational theory looks at practices, or “material bodies of work or styles that have
gained enough stability over time [...] to reproduce themselves.”81
[...]
“The language of action,” wrote Pier Paolo Passolini, is the language of the present tense—“but
in the present it makes no sense, or if it does, it does so only subjectively, in an incomplete,
uncertain, mysterious way.” For Passolini, montage accomplishes for the fragments of cinematic
material what death accomplishes for life: “It is thus absolutely necessary to die, because while
living we lack meaning, and the language of our lives (with which we express ourselves and to
which we attribute the greatest importance) is untranslatable: a chaos of possibilities, a search
80. Gavin J. Andrews, Non-Representational Theory & Health: The Health in Life in Space-Time Revealing, (Routledge, 2018), i, https://doi.org/10.4324/9781315598468.
81. Nigel J. Thrift, Non-Representational Theory: Space, Politics, Affect, International Library of Sociology (Routledge, 2008), 8.

46
for relations among discontinuous meanings.”82 Where continuity and coherence are not intrinsic
features of the original, they are fantasized into the fabric of its representation.
The shape that this imperative towards coherence makes, out of thin air, isn’t restricted by the
mechanics of montage or the plasticity of the material. To speak generally, coherence can be
found in the formal stability of vibe, tone, or sense that characterize the original. Deleuze’s Logic
of Sense locates sense as that “non-representing, unrepresentable, ‘wild element’ in language,” in
walking the endless surface of “a sort of ‘mobius strip’ between language and the world.”83 I find
this operationalization of sense to be equally at play in Peli Grietzer’s mathematically-informed
literary theory of vibe, and through his work, that of affect theorist Sianne Ngai on tone.84
Grietzer’s theory, steeped in the fundamentals of contemporary artificial intelligence, describes
variational autoencoders (VAE), a particular software architecture central to many generative
AI systems, described more generally as a kind of representation learning, The representation
the software learns is not available to the senses—it is not in itself aesthetic, but it can embed
high-dimensional aesthetic or sensory objects in a lower-dimension vector space: latent space.
What Grietzer proposes, based on his characterization of the VAE model architecture, is that
our engagement with aesthetic forms gives rise to a process of interpretation that is analogous to
representation learning: we comprehend the meaning of aesthetic objects, in part, as vibes.
Crucially, representation learning does not reveal fixed or universal truths. AI research shows
that the learning process is itself a deeply malleable process that draws on prior conditioning to
use, such that “different representations can entangle and hide more or less the different explanatory factors of variation behind the data.”85 It is with this interactive, mediating, contingent
quality of the learned representations that we can think of AI as media.
82. Pier Paolo Pasolini, “Observations on the Long Take,” October 13 (1980), 3.
83. Maggie MacLure, “Researching without Representation? Language and Materiality in Post-Qualitative Methodology,” International Journal of Qualitative Studies in Education 26, no. 6 (2013), 658, https://doi.org/10.1080/0951839
8.2013.788755.
84. Peli Grietzer, “A Theory of Vibe,” Glass Bead, no. Site 1. Logic Gate: the Politics of the Artifactual Mind (2017);
Sianne Ngai, Ugly Feelings (Harvard University Press, 2004), 29: Ngai defines their use of the term ‘tone’ as “a cultural object’s affective bearing, orientation, or ‘set toward’ the world.”
85. Yoshua Bengio, Aaron Courville, and Pascal Vincent, “Representation Learning: A Review and New Perspectives”
(arXiv, April 23, 2014), 1, http://arxiv.org/abs/1206.5538.

47
Fig. 13. Image description: A black and white image of a hand holding a folded piece of paper. Both the hand and
the paper appear to cast a shadow against a wall, and somehow they are both already shadows on the wall. What is
intended as an illustration of how three-dimensional forms—the hand, the folded piece of paper—are legible in lower
dimensional space (the 2D space of the shadow’s appearance on the flat wall), instead illustrates the particular glitch
of a poorly represented separation between dimensions.

48
Media are tools for thinking with. Overlapping with language, media offer compressed representations of reality made to be shared over the low bandwidth of our capacity for shared experience. We use media to access what is outside of our own perceptual or cognitive boundaries—to
think together.
By switching channels between media—tactile, visual, sensory, symbolic, lexical, interactive—we
build multimodal associations, extended techniques, to learn more about the texture of reality.
Here is an example (Fig. 13) of a switch between channels: to understand what is referred to as
latent space, it’s necessary to get the underlying principle of dimensionality reduction. Hold a
folded piece of paper in your hand between a light source and a blank wall. Note how the dimensionality of the fold, and your hand, can now be seen as a two-dimensional shadow—this is
the latent space representation of your three-dimensional folded paper and outstretched hand.
Consider all that this new representation allows: by tracing the shadow with a line on the wall,
by rotating or re-folding the paper to see all the ways the shadow changes, to learn about shadows, and light, and walls…
A latent space is a manifold for holding the reduced dimensional representation of a more complicated reality.
[...]
Learn through examples of prompts and completions:
“Your body? It consists in a bundle of rhythms.”86
“Does taking comfort qualify as life? Only if it flickers.”87
Any continuous signal depends on oscillation—repetition and circularity—to give the appearance
of stability, of persistence. In poststructuralist literary theory, this axiom extends to language
86. Henri Lefebvre, Rhythmanalysis: Space, Time, and Everyday Life (Continuum, 2004), 80.
87. Manning and Massumi, Thought in the Act, 26.

49
Fig. 14. Image description: A thermal shadow left by a handprint, captured with a black and white infrared camera. The shape of hand’s palm is visible across most of the frame, with soft gradients from light
in the center to dark along the fingers. The rest of the frame appears to have a grainy texture, with a few
ambiguous shadows or indentations distributed around.

50
itself. As Roland Barthes puts it “without rhythm, no language is possible: the sign is based on
an oscillation, that of the marked and the non-marked.”88
Is telling a story a form of dimensional reduction—lossy compression? The assumption that all
humans possess the innate drive (and ability) to tell stories, or to learn from stories, forecloses
all that is made possible by embracing what escapes narrative convention.89 The background, not
the actors. The rhythm of things, not the things themselves. Erin Manning and Brian Massumi
describe the kind of evidence these extra-narrative flows leave, in characteristic poetic language:
“organisms-that-person agitate in the mix, but always in a withness of environment: a becoming
ecology of practices.”90
How does a drum analyze time?
[...]
The Rhythmic Work of Interpretation
[...]
Recognition needs repetition.
[...]
The rhythmic event brings life, duration and environment together as the object of a particular
form of analysis, what Henri Lefebvre called rhythmanalysis: “Everywhere where there is interaction between a place, a time, and an expenditure of energy, there is rhythm.”91
88. Roland Barthes, “Listening,” in The Responsibility of Forms: Critical Essays on Music, Art, and Representation
(University of California Press, 1991), 291.
89. Angela Woods, “The Limits of Narrative: Provocations for the Medical Humanities,” Medical Humanities 37, no. 2
(December 2011): 73, https://doi.org/10.1136/medhum-2011-010045.
90. Erin Manning and Brian Massumi, Thought in the Act (University of Minnesota Press, 2014), 28.
91. Lefebvre, Rhythmanalysis, 15.

51
Extending the metaphor of rhythmanalysis, everywhere where there is interaction between prior
knowledge and anticipation, there is a frame that guides our senses. Suzanne Langer describes it
like this:
“Familiarity is nothing but the quality of fitting very neatly into the form of a previous
experience. I believe our ingrained habit [...] of seeing things and not sense-data, rests on
the fact that we promptly and unconsciously abstract a form from each sensory experience, and use this form to conceive the experience as a whole, as a ‘thing’.”92
“The experience of rhythm” in Eleni Ikoniadou’s auditory-focused reading of Langer’s process
philosophy, “cannot be rendered discursively; it is indescribable and, moreover, nonsubjective—since it belongs to the act itself.” Here, Ikoniadou draws on Langer’s concept of rhythm to
show “that aesthetic forms are not static but are assemblages of tension, accumulating continually without reaching an end or resolution (like ‘the breaking of the waves in a steady surf’).”
Rhythm, for Ikoniadou and Langer, is not a matter of equal divisions of time. There is no dividing line between events, only the “relation between tensions”—the building up of potential that
gives way to resonance.93
Langer describes the opportunity afforded by non-discursive (e.g. resonant, or as the interchange
of intensities between subjects and objects—affective) forms of analysis, in which sensing is the
action of creating worlds: “The world that actually meets our senses is not a world of “things,”
about which we are invited to discover facts as soon as we have codified the necessary logical
language to do so; the world of pure sensation is so complex, so fluid and full, that sheer sensitivity to stimuli would only encounter what William James has called (in characteristic phrase)
“a blooming, buzzing confusion.””
Language helps to make sense of the world, but affective attunement at the level of mechanistic
pattern recognition is key: “Out of this bedlam our sense-organs must select certain predominant
92. Langer, Philosophy in a New Key, 71-72.
93. Eleni Ikoniadou, The Rhythmic Event: Art, Media, and the Sonic, Technologies of Lived Abstraction (MIT Press,
2014), 15.

52
forms, if they are to make a report of things and not of mere dissolving sensa. The eye and ear
must have their logic—their ‘categories of understanding,’ if you like.”94
Pain researcher Ronald Melzack noted something similar to attunement happening within the
research leading to the text-based portion of the McGill Pain Questionnaire, finding that patients “may reject word after word, until one comes up that is clearly ‘right’; they may smile, say
‘that’s it!’ with a sense of certainty, and continue the process of rejection and selection. Generally, then, the patient appears to feel ‘compelled’ to choose only the appropriate words.”95
Logically, this process is not one of translation between sensation and language, but of interpretation between incommensurable realities: the patient as writer, the healthcare provider as
reader. The imaginary, providing the force of interpretation, doesn’t engage in representation, it
transduces, holding a moving shape, like a river carrying flood waters after a storm: “The imaginary comments with a dirge, or it just giggles.”96
[...]
Recognition needs repetition.
[...]
“Think of your day as a continuous series of scenes or episodes in a film.”97
The Day Reconstruction Method, a survey instrument for self-reported quality of life, compares
satisfaction with affect by soliciting not only momentary appraisal, but the reconstruction of remembered affective states, as anecdotes. Patterns, habits, and complex internal attitudes emerge
from this simple test. Asking subjects to divide their memory into repeated segments and con94. Susanne K. Langer, Feeling and Form: A Theory of Art Developed from Philosophy in a New Key, Scribner Library 122 (Scribner, 1953), 32.
95. Melzack, “The McGill Pain Questionnaire,” 283.
96. Glissant, Poetics of Relation, 199.
97. Daniel Kahneman et al., “A Survey Method for Characterizing Daily Life Experience: The Day Reconstruction
Method,” Science 306, no. 5702 (December 3, 2004), 1778, https://doi.org/10.1126/science.1103572.

53
sider them retrospectively, like scenes in a film, the questionnaire is shown to be both easier to
fill out, and easier to interpret.
The quick response to this survey is, of course, what kind of reconstruction does my impaired
memory, or other neurodivergent position, allow for? Importantly, we who fill out the surveys
are not producing simulations of illness, pain, or disability. Instead, we work with surveys to
create shared recognition of these experiences as patterns, in order to orient ourselves towards
what comes next. Repeated practices of asking for, listening to, remembering and responding to
subjective accounts of experience (testimonies) build mutual trust, recognition, and shared imagination, or sense of what’s possible.
Imagination, in an overly literal sense, is the work of making and reading images. In practice,
this means mental images in any modality, not just visual (holding a word, sound, place, gesture,
plan, system in mind).
Sociologist Ruha Benjamin situates imagination between individual and collective thinking, as
“the capacity to link individuals’ personal problems with broader social processes.”98
Where imagination invokes the communal, interpretation holds the subjective center. Interpretation is biased work, like reading, critiquing, curating, assembling, learning how patterns and
relations come together to make a unity.
[...]
Consider another passage by Ian White, a sharp-tongued deflection of interpretations that conflate the meaning of his work (staged performances, paintings, films) with the meaning of his
person (his identity, his biological data, his testimony, explanation, or intention):
98. Ruha Benjamin, Imagination: A Manifesto, (W. W. Norton, 2024), vii.

54
…if I am speaking it is not to ask you to witness my feelings or what I am pretending to
feel, which is nothing anyway. Here are no confessions. It is because the thing said is to
be there, thrown from me, not of me. ‘I’m not here’ cannot be spoken, stupid. But it is
one way of describing agency. And desire. (I’m trapped.)99
I read it in circles, then ask an AI to explain it to me like i’m five (ELI5):
Imagine playing with a toy, and you decide to make it say something.
When the toy speaks, it’s not really about the toy or its feelings because, well, toys don’t
have feelings. This is like saying, “The toy isn’t really talking; it’s me making it talk for
my story.”
It’s more about the story you are telling with the toy.
In our pretend game, we can change how things normally are. We can make something
that doesn’t usually change, change.
When we play with the toy differently, we make a new game. This can be a special way to
share ideas.100
What kind of learning?
AI reverses the flow of interpretation. What were once machines for converting language into
action now behave more like texts to be decoded. Philosopher of technology Beatrice Fazi sums
it up:
While much of computer programming has historically consisted in making human abstraction significant and operative within the instrumental remit of algorithmic machines,
with deep learning we face the opposite case: the abstractions and consequent instructions the machine gives itself now require interpretation for them to be significant and
operative for humans.101
Interpretation is a process that benefits from inquiry and interaction. To interpret an instru99. White, “Epigraph,” 15.
100. This section of text was synthesized by the author from samples generated by OpenAI’s GPT-4 Large Language
Model (https://chat.openai.com/) in response to the prompt “provide a summary of the preceding quotation that
would be understandable to a five year old”
101. Fazi, “Beyond Human,” 68.

55
ment, it helps to have access, to work with it, to play, to act and react, to produce and observe
effects, to assemble and test ad hoc models of how it might behave, to ask clarifying questions.
Explanation, on the other hand, abstracts away from the instrument. Explanation is summary
or simplification, framing and reframing to support patterns that the explainer considers to be
meaningful. AI excels at explanation (giving an account of itself), but fails at interpretability
(allowing for access, and the back and forth of play). This is concerning, particularly in terms
of how AI may interact with patient-generated health data. Explanation without interpretation
leads to, as Audre Lorde writes, “imagination without insight”—a crushing flaw in the promise
of automated analysis.102
[...]
Automation of learning, but what kind of learning?
As I walk to campus today, cutting across the busy traffic of students moving out of campus
housing, a self-driving car very politely stops to allow me to cross the street. Robots always work
to do better. In cases where better is poorly defined, or multiple versions of better conflict with
each other, whose lead should the robot follow? I am grateful for the autonomous vehicle’s deference to me, a pedestrian crossing in the middle of the block, but this is only one way of framing
the question, in terms of deference, of leader and follower, and the work of doing better.
Social-Emotional Learning (SEL) is too often misinterpreted as a focus on individual skills,
self-improvement and problem solving, instead of its intended push to reframe educational
processes within “a more context-based, relational, and cultural-situational view of problems
and their solutions.”103 Put another way, it’s not just about the students: teachers using an SEL
framework come to understand themselves as emotionally and relationally connected to one another, to the students, and the wider community.104
102. Audre Lorde, “Poetry Is Not a Luxury,” in Sister Outsider (Berkeley: Crossing Press, 1984), 1.
103. Diane M. Hoffman, “Reflecting on Social Emotional Learning: A Critical Perspective on Trends in the United
States,” Review of Educational Research 79, no. 2 (June 2009), 549, https://doi.org/10.3102/0034654308325184.
104. Schonert-Reichl, “Social and Emotional Learning and Teachers.”

56
[...]
Sociotechnical imaginaries, as detailed by Sheila Jasanoff, Sang-Hyun Kim and others, describe
“collective visions of good and attainable futures [...] both as the ends of policy and as instruments of legitimation.”105 Sociotechnical describes specific entanglements of social and technological factors contributing to a given situation. Imaginaries, as social articulations of what is
possible, are powerful, culture-specific resources. We can use the figuration of sociotechnical
imaginaries to understand what is expected of a new technology, such as AI-integrated PROMs,
in a given context, such as healthcare in the U.S.
[...]
Who imagines? Does filling out a PROM produce a kind of defamiliarization for the patient? A
“vertical perspective,” view from outside? What other perspectives are happening, and can they
be mapped or diagrammed? For this exercise, I propose an assemblage: Sociotechnical-Emotional
Learning.
What did you imagine would happen if you filled out this form? What did you anticipate?
Forms of Submission106
“The rhythmanalyst will not be obliged to jump from the inside to the outside of observed
bodies; [they] should come to listen to them as a whole and unify them by taking [their] own
rhythms as a reference.”107
[...]
105. Sheila Jasanoff, “Harvard STS Program » Research » Platforms » Sociotechnical Imaginaries,” accessed July 17,
2024, https://sts.hks.harvard.edu/research/platforms/imaginaries/.
106. Ebony Coletu, “Forms Of Submission: Acts Of Writing In Moments Of Need” (Stanford University, 2007): All
credit for this piercing phrase belongs to Ebony Coletu, whose dissertation and subsequent publications on the topic
of biographic mediation have held tremendous sway on my thinking.
107. Lefebvre, Rhythmanalysis, 20.

57
Every six months I return to the oncologist, who, after glancing at my lab results, performs a
curious (to me) ritual of methodically tapping on my chest with the flat side of two fingers close
together: thump thump, thump thump. First one spot and then another. Thump thump. Diagnosing by touch, and by listening, the oncologist puts the data back into my body.108
In “The Birth of the Clinic,” Michel Foucault wrote that clinical data originate from “the meeting point of the gestures of research and the sick organism”—they are actively solicited, assembled. The scale and location of this meeting point is variable: Instrumental mediation provides a
“solidified distance” between clinician and the object of their study. A medical gaze is synthesized
out of touch, sound, sight, and social order.
“The stethoscope,” in the history of medical perspective that Foucault assembled, “is the measure
of a prohibition transformed into disgust, and a material obstacle.” In locating the embedded
function of disgust, he is drawing from the writings of René Laënnec, the 19th century physician
and musician, who first popularized the use of the stethoscope.109 Laënnec promoted his invention as an alternative to the practice of immediate auscultation, or the practice of listening by
placing ears or hands directly on a patient’s body, which he characterized as “inconvenient for
both doctor and patient; only disgust makes it more or less impracticable.”110
I don’t mean to imply that healthcare providers use stethoscopes because they find their patients disgusting, but rather that disgust—as a social function of regulating interpersonal boundaries and hierarchies such as class and gender—is embedded in the tools and the customs around
their use.111
I am drawing on Jonathan Sterne’s study of medicine’s acoustic culture here, centered on “the
relational disposition of bodies and elements” in medical examinations that employ techniques
108. Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (Routledge, 2003), 162: Foucault
provides a much more thorough explication of how hearing, touch, and vision work together in clinical encounters,
expanding on the example of the thoracic exam as I describe it here.
109.
110. Foucault, The Birth of the Clinic,” 163.
111. While disgust is recognized in most theories of affect as a basic negative emotion, research rooted in psychoanalytic or cultural studies traditions (such as Sylvan Tomkins’ work) is more likely to expand on the social and cultural
functions of disgust than those working in disciplines like neuroscience (Jaak Panskepp, for example).

58
of listening, and “the organization of the knowledge gained through those relationships.”112 If
Laënnec’s stethoscope, and the technique of mediate auscultation that it gave rise to “provided
for a social distance between classes and genders, it also provided the distance between knower
and known” Sterne proposes; mediated listening enacts “the physical configuration of a particular
form of knowledge.”113
[...]
Crip theorist Robert McRuer, in “Composing Bodies; or, De-Composition” details the uses of
composition (as a creative and pedagogical act) to trouble the idea that “identity [...] emerges
from disparate features that are supposed to be organized into a seamless and univocal whole.”114
Invoking Donna Haraway’s notion of “permanently partial identities [...] living within limits and
contradictions” McRuer calls for a practice of critical de-composition: “re-orienting ourselves
away from [...] compulsory ideals and onto the composing process and the composing bodies—
the alternative, and multiple, corporealities—that continually ensure that things can turn out
otherwise.”115
[...]
Prompted to Simply ask a question by the AI agent, I pause to remember myself and what my
questions consist of.
[...]
I keep returning to my oncologist’s admonition to “not become a professional patient.” To engage
with medical care beyond preventive and routine maintenance, to be a complicated problem, to
112. Jonathan Sterne, “Mediate Auscultation, the Stethoscope, and the ‘Autopsy of the Living’: Medicine’s Acoustic
Culture,” Journal of Medical Humanities, 2001: 117.
113. Sterne, “Mediate Auscultation,” 120.
114. Robert McRuer, “Composing Bodies; or, De-Composition: Queer Theory, Disability Studies, and Alternative
Corporealities,” JAC 24, no. 1 (2004), 57.
115. McRuer, “Composing Bodies; or, De-Composition,” 59.

59
hold multiple conditions, co-morbidities and confounding factors, requires professionalizing oneself as a patient—to become information, to perform legibility.
Biological mediation, in Ebony Coletu’s formulation, “refers to any structured request for personal information that facilitates institutional decision-making about who gets what and why.”116
The varieties of functional life writing, from job and school applications to requests for social
support, scholarships, grants, and so on, entail a continual retelling and reshaping of one’s biography to match institutional patterns and categories of need.
As “a recurring form of self-disclosure required when requesting assistance or cooperation to
achieve life goals,” this kind of life writing “transform[s] the ways we speak of opportunity,” as
disabled, sick, poor, incarcerated, and any other marginalized people know deeply.117
For example: in the U.S., to be recognized as disabled requires the performance of belonging to a
formal category. To receive assistance through public support requires—alongside the formal application process—the loss of privacy, the continuing review of resources and living circumstances, and adherence to a low material standard of living: “ceremonies of social degradation,” to use
disability historian and activist Paul Longmore’s term.118 Each of these burdens serves only to
maintain the legible authenticity of the applicant.
What does legible mean in the context of patient-reported outcome measures? What are the
consequences for a patient who returns PROMs that are incorrect or incomplete? What makes a
good or responsible completion of a PROM survey? How are outliers folded back in to maintain
meaningful patterns? What use is an ambiguous response?
[...]
116. Ebony Coletu, “Biographic Mediation,” A/b: Auto/Biography Studies 32, no. 2 (May 4, 2017), 384, https://doi.or
g/10.1080/08989575.2017.1289018.
117. Coletu, “Biographic Mediation,” 384.
118. Paul K. Longmore, Why I Burned My Book and Other Essays on Disability, (Temple University Press, 2003),
240.

60
Performance studies scholar José Esteban Muñoz’s use of the term disidentification, following the
work of linguist Michel Pêcheux, is crucial for working with productive ambiguities:
Interrupted in the activities of daily living by a prompt—an interpellation—to fit a pattern, one
can either adjust their behavior and presentation to match the pattern; or resist, continuously
pushing back with a mirror pattern of their own.
The third option is to disidentify, where the subject “neither opts to assimilate within such a
structure nor strictly opposes it”119
Instead, the encounter with dominant patterns becomes an enabling misreading, where a subject
is able “to read oneself and one’s own life narrative in a moment, object, or subject that is not
culturally coded to ‘connect’”120
Disidentification reframes contact between dominant patterns and subjects as something like a
missed encounter: instead of forming either matching or mirroring patterns, we stay incommensurable.
[...]
Dismediation, as proposed by Mara Mills and Jonathan Sterne, extends Muñoz’s usage of disidentification to understand the ways disability and media shape each other. With this approach,
Mills and Sterne make a case for study with “disability as method, not simply as content”:
departing from models of communication premised on idealized or universal language, dismediation “begins from a presumption of communicative and medial difference and variety.” Instead
of using media as “the tools to repair a damaged or diminished condition of human communication,” Mills and Sterne advance a basis for “communication as something fraught, supplemented,
119. José Esteban Muñoz, Disidentifications: Queers of Color and the Performance of Politics, Cultural Studies of the
Americas, v. 2 (University of Minnesota Press, 1999), 11.
120. Muñoz, Disidentifications, 12.

61
and interdependent in all of its many forms.”121
Dismediation, as an analytical process, begins with the premise that there is no ground truth, no
world that is available to the senses without media, and that “every media form is built around
different ideas of the natures of human subjects and bodies.122
[...]
What is relevant, what gets discarded? Why has this record of my life (health, experience) been
edited in the way it has? Or, what model would I prefer to capture myself with?
Life writing, as the continuous interchange between what we carry with us (our prior knowledges, our hupomnemata (notebooks), as Foucault puts it), plus what we experience as new in the
present moment, is a tangible way of feeling how representations are not static, but have their
unique movements and flows.123
Social, cultural, and technological contexts each contribute to the evolution of what we model as
natural language. While this suggests a continuous requirement for upgrade and improvement of
natural language models, there is equal demand for better awareness of the factors that create
these contexts, and the influence of feedback between the models and what they represent.
This kind of inferential logic is called abduction—the tacking back and forth between futures,
pasts and presents, between ideas and observations, as a way of building theories.124
Adele E. Clarke traces the genealogy of the term to pragmatist philosophy that embraced the
potential of abductive inquiry—in contrast with inductive or deductive logics—to produce con121. Mara Mills and Jonathan Sterne, “Dismediation— Three Proposals, Six Tactics,” in Disability Media Studies, ed. Elizabeth Ellcessor and Bill Kirkpatrick (New York University Press, 2017), 370, https://doi.org/10.18574/
nyu/9781479867820.003.0017.
122. Mills and Sterne, “Dismediation,” 371.
123. Michel Foucault, “Self Writing,” in The Essential Works of Foucault, 1954-1984, ed. Paul Rabinow (New York:
New Press, 1997), 209.
124. Adele E Clarke, “Anticipation Work: Abduction, Simplification, Hope,” in Boundary Objects and Beyond: Working with Leigh Star, ed. Geoffrey C. Bowker, 2016, 90.

62
cepts out of deep awareness rooted in tangible evidence. As a form of educated guessing, abduction “is not solely intellectual or cognitive, but also experiential.”125
For the foreseeable future, abduction, creative inquiry, and human-in-the-loop computational
processes remain critical to the project of embedding patient-centered outcomes at the center of
AI health tools.
Good representations:
Analysis is the technique by which representations are made. What is a good, or necessary, representation?
Consider the current tools of generative AI: Transformers learn what is important and pay attention to it.126 Diffusers destroy structure, then learn how to iteratively restore it.127 Variational
Autoencoders learn what is essential to make a compressed version of something, then reverse
the process to learn how to make it whole again.128 Generative models use latent space to creatively explore complex things in a simpler and more meaningful form.129 Meaningfulness is in
proportion to noise. A signal is meaningful when it carries more information than noise. Each of
these tools, when used generatively to resynthesize from a learned representation, provides tangible evidence of what has been learned, what properties of the original data have been captured,
and in the gaps: what properties have been lost.
[...]
125. Clarke, “Anticipation Work,” 91.
126. Ashish Vaswani et al., “Attention Is All You Need,” arXiv:1706.03762 [Cs], December 5, 2017, http://arxiv.org/
abs/1706.03762.
127. Jascha Sohl-Dickstein et al., “Deep Unsupervised Learning Using Nonequilibrium Thermodynamics” (arXiv, November 18, 2015), http://arxiv.org/abs/1503.03585; Jonathan Ho, Ajay Jain, and Pieter Abbeel, “Denoising Diffusion
Probabilistic Models” (arXiv, December 16, 2020), http://arxiv.org/abs/2006.11239.
128. Diederik P. Kingma and Max Welling, “An Introduction to Variational Autoencoders,” Foundations and
Trends® in Machine Learning 12, no. 4 (2019): 307–92, https://doi.org/10.1561/2200000056; Diederik P. Kingma and
Max Welling, “Auto-Encoding Variational Bayes” (arXiv, December 10, 2022), http://arxiv.org/abs/1312.6114.
129. Ian J. Goodfellow et al., “Generative Adversarial Networks” (arXiv, June 10, 2014), http://arxiv.org/
abs/1406.2661; R Devon Hjelm et al., “Learning Deep Representations By Mutual In- Formation Estimation And
Maximization,” 2019.

63
The goal of analysis is to produce generalizable insight into the original object, or data, being
studied.
Natural language processing, or how computers come to understand and use language as humans
do, has driven what we think of as the capacity for AI to effectively communicate meaning. Multimodal AI, or the modeling of relationships between different representational modes—sound,
image, timbre, texture, tone, vibe, scene, gesture—extends this capacity, tacitly acknowledging
that concepts of natural language are inherently incomplete, that meaning is contextual, relational, and sensory.
[...]
Can we speak in terms of the texture of illness? Of pain? The texture of neurodivergence, or a
non-normative bodymind? Or even the texture of evaluative methods, such as patient-reported
outcome measures? How might these textures be represented, or synthesized, so as to better
understand them?
The task of distinguishing one texture from another, as an aspect of images, language, and of
signals more generally, has long been a focus of AI and computer sensing. In computational
terms, texture—how a thing feels, the attributes of surface and structure as they appear in a
consistent way to the senses—is modeled as transitions between local and global attributes, as
a territory (topos). In Glissant’s notion of opacity, texture provides a conceptual metaphor that
allows for different kinds of difference: “opacities can coexist and converge, weaving fabrics. To
understand these truly one must focus on the texture of the weave and not on the nature of its
components.”130
[...]
130. Glissant, “For Opacity,” 190: Is it productive to think about Glissant’s opacity alongside Derrida’s différance,
by way of textural metaphors? Texture, as the response of contingent materiality to probing by senses, insists on the
relay between components and surfaces, context, and chains of reference. Why is water wet?

64
Fig. 15. Image description: A black and white image containing eight unique textures tiled together as a
mosaic. The image is designed as a test card to prepare computer vision applications to discern transitions
between textures along non-horizontal and non-vertical boundaries. The accompanying map of texture
regions is shown below.

65
Fig. 16. Key to the test image above: the various textures are present in the test image in approximately
equal proportions. Here, the key shows that the upper-left portion contains three textures in an arrangement where two textures converge along curved paths against a background of the third texture. The
upper-right portion of the mosaic contains regions with non-vertical and non-horizontal boundaries, both
straight and slightly curved. The bottom half of the image is made up of the eight textures in irregularly
shaped regions of approximately equal size.131
131. Allan G Weber, “The USC Texture Mosaic Images” (University of Southern California, VIterbi School of Engineering, Ming Hsieh Department of Electrical Engineering Signal and Image Processing Institute, July 27, 2004).

66
I will for a moment draw a parallel between instruments that measure (medical, scientific) and
instruments that make (music, images). To create, or modify the audible textures produced by a
musical instrument, a musician may employ what are called extended techniques: Precisely coordinated movements and positioning of bodies, lips, tongue, breath, fingers, lungs, throat. Some
extended techniques obscure the player’s physicality, masking or rerouting the sound’s perceived
origins. Others draw added attention to the player’s physical presence, the shape and posture of
their body, the grain of their voice, their various capacities and endurances.
Extended technique suggests the extension of a world, holding out for a greater expanse of space,
time, and imagination.132 At the same time, naming something as extended removes it from a set
of otherwise standard or normal practices. This distinction is not self-evident: Instruments invite
play, discovery is within their regular use, if not somehow against the grain of habit.
Thought of as playing different or out of bounds brings extended technique into the shared metaphorical space with notions of (un)natural places and bodies that Eli Clare writes about. This is
about pushing at the edges of a representation by walking the space of a manifold, not to erase
the contours of constraint, but to soften them with practice, to make their shape more evident—
more textured—and inclusive of variation.
[...]
Classification, sorting things continuously into one or another category, needs good representations. Working towards better mathematical representations of a signal’s texture, researchers
have formalized the requirements of a good representation.
A good representation should meet the following criteria:133
1. If the signal is translated, the representation should not change.
132. Rachel Beetz, “Flute: Extended Techniques,” Rachel Beetz, accessed March 6, 2024, https://www.rachelbeetz.
com/extended-flute-technique-guide.
133. Stephane Mallat, “Recursive Interferometric Representations,” in European Signal Processing Conference, 2010,
716.

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2. If the signal is deformed, the representation should be deformed in a proportional way.
3. Signals that are different should be represented differently.
This can be learned.134
[...]
Unless we think of everything as a signal, what makes for a good representation depends on
what it is used for. As the purpose of representation moves from simulation to finding and
explaining patterns in data—from discrimination (what number did you write?) to recognition
(what patterns in your behavior define you?)—measures of goodness shift from interpretability,
and the ability to recall with precision, to the casting of accurate predictions, and the capacity
for reason and action.
Before integrating AI and patient-reported outcome measures, consider what the core tasks of
making representations will be, the different consequences of each task, and defining the task
shapes how the tools are used: Are we extracting information from a noisy signal, or summarizing, making abstractions and translations? Generalizing from specifics, or fine-tuning a general
model to meet local needs? What kinds of predictions will be made?
[...]
“The myth of prediction,” as outlined by writer and critic Nora N. Khan, crushes imagination—it
“shapes our sense of possibility to an extreme degree” through logics that orient us “in bounded,
limited ways toward people, places, the possibilities of how our lives can unfold.”135
[...]
134. Bengio, Courville, and Vincent, “Representation Learning.”
135. Nora N. Khan, Mirror Stage: Between Computability and Its Opposite, Holo 3 (Holo, 2022), 62

68
The goal of a representation is to make our own latent selves recognizable.
Meaningful Analysis
In search of a working definition of analysis, I turn to Audre Lorde’s “Poetry is not a Luxury.”
Poetry, she tells us, is a form of self-analysis, “the quality of light by which we scrutinize our
lives.” Poetry, as analysis, is the latent space of what we can sense and know: “It is through poetry that we give name to those ideas which are, until the poem, nameless and formless-about to
be birthed, but already felt.”136
I see Lorde’s “quality of light” in the processes described by artist and writer hannah baer as
intrasubjective restoration. In this frame, baer is drawing a comparison between generative AI
and the psychoanalytic use of projective tools: ambiguous forms, such as Rorschach inkblots, or
indistinct narrative illustrations, like those included in the Thematic Apperception Test (TAT).
These images are not particular—they don’t index anything in reality, and their meanings are
not fixed. And yet they are recognizable through the affect responses they produce and the narratives they conjure. We relate to them.
Projective instruments do not validate well: there is no demonstration that they consistently
measure constructs as intended. However, they serve another purpose: by rerouting both the clinician and the patient’s attention through the image, they give us something to talk about. We
can ask questions and fill in missing data.
AI, as either the simulation or resynthesis of familiar patterns, can be a catalyst for generative
misrecognition—a tool for defamiliarization (dépaysement) and disidentification. As processes of
affective disentangling, we may (optimistically) use AI to apprehend gaps or biases in representation, filling in data from our own experience to understand the tools as non-innocent, and to
disassociate from normative visions of selfhood.
If, as baer asks, projective instruments such as Rorschach or TAT, “don’t contain particular
136. Lorde, “Poetry Is Not a Luxury,” 1.

69
Fig. 17. An example image from Christina Morgan and Henry Murray’s set of Thematic Apperception
Test (TAT) cards (1935).137 What story does this picture tell? Image description: a vertical rectangle of
white, to the left of center. Framed as a silhouette in this rectangle are the outline of an open window or
door, and a partial human form, which occupies the entire bottom right side of the white frame, occluding
the corner and continuous with the black background. There are no details or breaks in the image apart
from the silhouette, rendering the entire image in only black and white, no shades of gray. The figure’s
arm, outstretched horizontally, bisects the frame at roughly the vertical midpoint. The figure’s head, seen
in profile facing to the left from the right side of the frame, tilts slightly up. At the bottom of the frame,
an ambiguous shape interrupts the white rectangle, continuous with the silhouette of the figure.
137. Christiana D. Morgan and Henry A. Murray, “A Method For Investigating Fantasies: The Thematic Apperception Test,” Archives of Neurology & Psychiatry 34, no. 2 (August 1, 1935), 289, https://doi.org/10.1001/archneurpsyc.1935.02250200049005.

70
images and instead just help us tell our own stories, is that also what we’re doing with the
ambiguous figure of AI?”
Our engagement with the ambiguity of AI is not innocent or un-mediated: As Meredith Whittaker warns, the computational systems that produce these engagements are often private and
pursuing the capture of attention, access, and control, “threading through our public life and
institutions, concentrating industrial power, compounding marginalization, and quietly shaping
access to resources and information.”138
Where AI is applied as a mediating layer between individual persons and health infrastructures,
it is all the more critical to direct our attention to how power works on and through each point
of contact. It is also imperative to push humanist sway onto emergent logistics of evaluation,
optimization, and management—tilting towards what baer calls “a world where deep transformation—creating something that connects us more deeply to ourselves and one another, redrawing
our self-image—is the tendency,” rather than reproduction of poorly fit and inequitable categories.139
[...]
One goal of placing person-centered and prosocial outcomes at the heart of AI health technologies is to avoid “promoting survival at the expense of wellbeing.”140 Understanding the difference
requires coordination across specialized fields, including advocacy, design, and policy-making,
supported by the broad theoretical work of tending to categories and methods, where “work is
the link between the visible and the invisible.”141
Adele E. Clarke refers to the multiple and contingent ways these coordinated processes are taken
138. Meredith Whittaker, “The Steep Cost of Capture,” Interactions 28, no. 6 (November 2021), 51, https://doi.
org/10.1145/3488666.
139. hannah baer, “Projective Reality,” Artforum, Summer 2023, 13.
140. Samantha Cruz Rivera et al., “Embedding Patient-Reported Outcomes at the Heart of Artificial Intelligence
Health-Care Technologies,” The Lancet Digital Health 5, no. 3 (March 2023): e168, https://doi.org/10.1016/S2589-
7500(22)00252-7.
141. Clarke, “Anticipation Work,” 86.

71
up, as anticipation work. In the context of a shift across science and industry from actuarial
practices to predictive analysis and data-driven forecasting, Clarke uses the figure of anticipation
to pin down a parallel shift in how care-giving responsibilities are delegated. The examples given
list the
Anticipation is the future-oriented corollary to articulation work, the often-invisible channels
of coordination, delegation, vigilance and timing that keep things on track.142 “Anticipation
work,” in the examples provided by Clarke, “includes but is not limited to gathering information,
abducting, simplifying, guessing, deciding, planning, acting, and hoping against hope that the
guesses made are good enough.” From this bundle of attitudes and actions, Clarke frames anticipation as consisting of three interacting and overlapping phases: abduction, simplification, and
hope.
Abduction, discussed previously in this chapter, is the inferential task of tacking back and forth
between emergent theories and observations. Simplification—editing, sorting, arranging, representing, abstracting and generalizing—covers all the tools and techniques for making something
complex more manageable, including what Clarke, Leigh Star, and others in science and technology studies have pointed to as the (invisible) practice of deleting that is fundamental to the
production of facts.143 Hope, finally, is the affective dimension of anticipation, a driving force, an
outcome, and a commodity produced by anticipation work.
This is the ordinary work of maintaining categories and thresholds: The work that curtains do.
Osmosis and diffusion. Voter district remapping. Breathwork. Border walls. HVAC systems. Difference without separation. Bodies without organs. Liminal categories. Lenticular logics. Single
stream recycling. Immune response. Navigating personal boundaries. Compassion and intersubjectivity. The reality of classification is found in its consequences. As Leigh Star and Geoffrey
Bowker show, drawing on their pragmatist reading of the World Health Organization’s Interna142. Clarke, “Anticipation Work,” 86.
143. Susan Leigh Star, “Simplification in Scientific Work: An Example from Neuroscience Research,” Social Studies
of Science 13, no. 2 (May 1983), 205, https://doi.org/10.1177/030631283013002002: In this article, Star details the
institutional constraints that render certain aspects of data, process, and presentation as outside of the scope of research. These include, for example, anomalous, unresolved, or noisy findings, as well as findings that require excessive
capacity, context or explanation.

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tional Classification of Diseases, the work of classifying is distinct from practices of naming and
explaining, and as such should be understood through its downstream effects: “What matters [...]
is who, under what conditions, takes it to be true.”144
What are the best practices for making and maintaining categories?
Center the interpretive flexibility that humans do well, with all the bias, richness, and context
our positionalities bring to the process.
Temper the flow of interpretation, thinking in terms of boundary objects, a concept laid out by
Leigh Star to describe arrangements that allow different groups to work together without consensus: “those objects that are plastic enough to be adaptable across multiple viewpoints, yet
maintain continuity of identity.”145 A map that guides different groups of people to experience
the same site in different ways is one kind of boundary object. Many tools are. A library, where
people disagree about which books belong and which should be removed, is not one.
“Often, boundary implies something like edge or periphery, as in the boundary of a state or a
tumor. Here, however, it is used to mean a shared space, where exactly that sense of here and
there are confounded.”146 These objects work because ownership is ambiguous but each group
who takes part finds their information needs satisfied. Knowledge is always partial: no one knows
everything, but everyone knows something. As objects holding the shared information needs of
patients, providers, researchers, and caregivers alike, patient-reported outcome measures are an
ideal example of boundary objects whose use is already navigated separately and together by
each group.
144. Geoffrey C. Bowker and Susan Leigh Star, Sorting Things out: Classification and Its Consequences, Inside Technology (MIT Press, 1999), 289.
145. Susan Leigh Star, “The Structure of Ill-Structured Solutions: Boundary Objects and Heterogeneous Distributed
Problem Solving,” in Distributed Artificial Intelligence (Elsevier, 1989), 37, https://doi.org/10.1016/B978-1-55860-092-
8.50006-X: Star’s analysis of organizational problem solving in scientific communities led to her concept of boundary
objects, which, because of their ability to meet community goals, she promoted as the appropriate data structure for
(a distributed) artificial intelligence.
146. Susan Leigh Star, “This Is Not a Boundary Object: Reflections on the Origin of a Concept,” Science, Technology,
& Human Values 35, no. 5 (September 2010), 602, https://doi.org/10.1177/0162243910377624.

73
Recommendations
Take a walk together, as an alternative to explaining or making an argument.
In her germinal text “The Rejection of Closure,” whose characterization of open forms is discussed above, Lyn Hejinian draws on Umberto Eco’s reasoning as to the ways author and reader
come together to make meaning—a position outlined in his 1962 essay “The Open Work.” Speaking to the generative creativity both reader and writer bring in response to an open form, and
the “polygendered impulses” it activates, Hejinian quotes Eco on what he called inferential walks,
a peripatetic practice of reading and writing that resonates for me as an analytical technique.
An inferential walk is a method for embedding intertextual ideas, their frames of reference,
across worlds. As Eco puts it: “to identify these frames the reader has to ‘walk,’ so to speak,
outside the text, in order to gather intertextual support (a quest for analogous ‘topoi,’ themes or
motives).”147
Topoi, the plural of topos, a group of ideas stretched out into space, a problem space, or a decision space. Importantly, the notion of taking a walk to engage with ideas, doesn’t need to be
strictly metaphorical. I’m thinking of a dialogue between Judith Butler and the artist Sunaura Taylor, who uses a wheelchair because of a congenital physical disability. As the two stroll
through San Francisco’s mission district, they turn to the subject of walking in the context of
disability. Taylor offers: “I use that word [walking] even though I can’t physically walk. I mean,
to me, I think the experience of going for a walk is probably very similar to anybody else’s: it’s
a clearing of the mind, it’s enjoying whatever I’m walking past. And my body is very involved
even though I’m physically not walking.” Butler invites in return: “Nobody takes a walk without
there being a technique of walking. Nobody goes for a walk without something that supports
that walk, something outside of ourselves.” Part of taking a walk is the everyday opportunity to
“rethink what a walk is in terms of all the things that power our movement, all the conditions
147. Umberto Eco, The Role of the Reader: Explorations in the Semiotics of Texts, Advances in Semiotics (Indiana
University Press, 1979), 32.

74
that support our mobility.”148 So, in walking we clear the mind, enjoy the surroundings, live in
our bodies—while coming to understand how the environment (physical, technical, social, etc)
supports, impedes, and redirects our passage.
A central problem that walking gets at, for me, is the question of navigating territories—In
terms of discipline, access, literacies, roles—the transversal cutting across and within boundaries
of Rosi Braidotti’s nomadic subjectivity or Maria Lugones’ “world”-traveling.
149
[...]
The medical humanities offers a range of approaches to the therapeutic exchange of perspectives—switching places—to build and strengthen trust and recognition between patients, providers, and caregivers. These approaches use ritual, performative, and artistic forms in unique
ways to create meaningful models, enabling present situations and dynamics to be explored and
reinterpreted. In addition to the modalities explored experimentally throughout this dissertation,
such as image-making, poetry, and lyric essay, I consider the templates for active, collaborative
reconfiguration of relationships found in role-playing activities, and the politically-engaged forum
theater of Augusto Boal, touched on earlier in this chapter, as forms of analysis with-and-as
imagination.
In Boal’s forum theater, one role is reserved for a kind of structural facilitator or guide, what he
calls the “Joker.” While always open to reinvention by whoever inhabits the role, a few obligatory rules for the Joker are spelled out, for example: “Jokers must avoid all actions which could
manipulate or influence the audience. They must not draw conclusions which are not self-evident. [...] Jokers personally decide nothing. [...] The Joker must constantly be relaying doubts
back to the audience so that it is they who make the decisions.”150 Boal characterizes the Joker’s
method as Socratic, helping the Spect-Actors to gather and prepare their thoughts and actions
148. Sunaura Taylor and Judith Butler, “Interdependence,” in Examined Life: Excursions with Contemporary Thinkers, ed. Astra Taylor (The New Press, 2009), 186-187.
149. Braidotti, Nomadic Subjects; Maria Lugones, “Playfulness, ’World’-Traveling, and Loving Perception,” in Pilgrimages Peregrinajes: Theorizing Coalition Against Multiple Oppressions, Feminist Constructions (Rowman & Littlefield,
2003), 110.
150. Boal, Games for Actors and Non-Actors, 261.

75
like a doula or midwife (practicing “a maieutics of body and spirit”).151
[...]
AI agents should learn from doulas: to be guides. Advocates, not explainers, learning to ask clarifying questions, learning about causes and consequences.
It should be apparent that the arc of computational engagement with natural language understanding is limited by what objective, abstract analysis can do.152 This is why you can’t make a
computer that feels pain.153 Situated, embodied experiences are necessary for placing language
into a world, indexing concepts to sensations, and reasoning through changing environments and
conditions.154
It has been suggested that automating understanding requires a return from the quickness of
pattern matching to the slowness of abstract reasoning, integrating the inductive pattern matching of connectionist AI with transductive, chain-of-thought models.155 What this entails, speaking
broadly, is a move away from certainty of predictions and singular interpretations, towards open
systems, with “the flexibility to deal with uncertainties by their openness to new forms of data,
information, all kinds of change, be capable of self-restructuring, and so on.”156
In place of mimicking human intelligence, continued close integration of AI with human life may
lead to a proliferation of kinds of understanding.157 What remains to be seen is whether these
new kinds of understanding align with, support, or reconfigure basic human capacities for providing care.
151. Boal, Games for Actors and Non-Actors, 262.
152. Melanie Mitchell, “Artificial Intelligence Hits the Barrier of Meaning,” Information 10, no. 2 (February 5, 2019):
51, https://doi.org/10.3390/info10020051.
153. Daniel C. Dennett, “Why You Can’t Make a Computer That Feels Pain,” Synthese 38, no. 3 (1978): 415–56,
http://www.jstor.org/stable/20115302.
154. Jiannan Xiang et al., “Language Models Meet World Models: Embodied Experiences Enhance Language Models”
(arXiv, October 28, 2023), https://doi.org/10.48550/arXiv.2305.10626.
155. François Chollet, “On the Measure of Intelligence,” arXiv:1911.01547 [Cs], November 25, 2019, http://arxiv.org/
abs/1911.01547.
156. Clarke, “Anticipation Work,” 87.
157. Melanie Mitchell and David C. Krakauer, “The Debate Over Understanding in AI’s Large Language Models,”
Proceedings of the National Academy of Sciences 120, no. 13 (March 28, 2023): e2215907120, https://doi.org/10.1073/
pnas.2215907120.

76
[...]
“We do not know the truth: there is hope. […] We know the truth: there is no hope.”158
[...]
158. Moreira and Palladino, “Between Truth and Hope,” 67.

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THE VALIDATED INSTRUMENTS:
A NARRATIVE REVIEW159
Background
This chapter takes a broad view towards understanding the characteristic research narratives
that bring artificial intelligence (AI) and patient-reported outcome measures (PROMs) into
alignment. While this view encompasses a wide array of disciplines and settings, it finds a limited range of narratives. The ascendant prioritization of patient- and value-centered models of
care, and the shifts in knowledge and culture these priorities endeavor to bring about, provide
the motivations, inform the underlying assumptions, and shape the ethical and technical concerns that illuminate the path forward.
There are, as of now, no holistic hybrids at this intersection, no full integration of artificial intelligence and patient-reported outcome measure has been validated. However, the literature shows
many paths towards the integration of AI and PROMs, through iterative advances in methods,
across diverse contexts, with barriers to overcome, and an increasingly coherent sense of what
the benefits could be as well as what cautionary measures need to be in place.
Objective
Two primary questions motivate this narrative review:
1. What would an integration of artificial intelligence and patient-reported outcome mea159. A validated instrument is a tool that has been tested to show its reliability, accuracy, and usefulness in measuring certain things—constructs—that we believe to exist, but find difficult to observe directly, like a person’s inner
thoughts, emotions, and sensations. A validated instrument will often take the form of a questionnaire or survey. The
term’s genealogy can be traced to the field of psychometrics, a branch of psychology where instruments are developed
and refined, through processes that assess validity. Validity means soundness. The process of validation examines how
reliably an instrument performs its task (its internal consistency), how it measures what it is intended to measure
(its construct validity), and how it performs across different populations, formats, or settings (cultural, linguistic, or
contextual validity). An instrument is an extension of the researcher’s senses and actions that reliably represents their
intentions even as it adapts to new settings. A validated instrument is one that extends the researcher’s senses and
actions and returns data that is meaningful and useful to them. And everything is sound.

78
sure (AI-PROM) do?
2. What questions are researchers pursuing this integration asking, to know they are on a
good path?
Subject Matter
What are patient-reported outcome measures?
Patient-reported outcomes (PROs) are timely records of a patient’s experience of illness—their
inner thoughts, bodily sensations, and social experience. PROs are raw data coming directly
from the patient, without interpretation of the patient’s response by a clinician or anyone else.
As such, PROs are one kind of patient-generated health data (PGHD).
A patient-reported outcome measure (PROM) is a standardized tool for capturing PROs: a survey, instrument, scale, or single-item measure used to assess particular PROs, such as symptoms,
behaviors, or functional abilities, as perceived by the individual, obtained by directly asking the
individual to self-report. PROMs serve as a means to assess patient-centered outcomes, guide
clinical decision making, evaluate treatment effectiveness, and inform healthcare policy.
PROMs vary in their specificity and adaptability. Types of PROM include generic instruments
that can be applied across different health conditions or populations, and condition-specific measures designed to assess a particular aspect of a disease or condition.
Examples of commonly used PROMs include PROMIS (Patient-Reported Outcomes Measurement Information System, a set of tools for measuring physical, mental, and social health, the
generic EQ-5D and SF-36 surveys (used to measure general physical and mental wellbeing along
with health-related quality of life (HRQoL)), or the condition-specific PRO-CTCAE (Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, used in

79
Cancer treatment clinical trials to monitor treatment-related symptoms).160
A specific category of PROM, the patient-experience measure (PREM), records patient perspectives on the quality of care, service, and treatments they receive, often in the form of a patient
satisfaction survey. Together, PROMs and PREMs contribute to an understanding of the value
of healthcare received by a patient over time.161
PROMs can be found as paper surveys, web-based tools, standalone apps on a phone or tablet, or as part of a hospital’s patient portal. The integration of PROMs with Electronic Health
Records (EHRs) has become increasingly common, enabling healthcare providers to access and
analyze PROM data alongside other clinical information, facilitating a more holistic view of
patients’ health status.
What is artificial intelligence?
Artificial Intelligence (AI) is a widely used term to describe any tool or system that simulates,
augments, or automates the way people make sense of the world. In the context of healthcare,
AI encompasses a wide range of techniques, from image classification to predictive modeling,
chat agents, decision support, and text analysis.162
In contrast with traditional statistical methods which begin by applying a priori models to
160. “PROMIS,” accessed July 18, 2024, https://www.healthmeasures.net/explore-measurement-systems/promis; Amylou C. Dueck et al., “Validity and Reliability of the U.S. National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE),” JAMA Oncology 1, no. 8 (November
2015): 1051–59, https://doi.org/10.1001/jamaoncol.2015.2639.; “36-Item Short Form Survey from the RAND Medical
Outcomes Study,” accessed July 18, 2024, https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form.
html.; “EQ-5D-5L,” EuroQol, accessed July 18, 2024, https://euroqol.org/information-and-support/euroqol-instruments/eq-5d-5l/.
161. Marieke M. van Buchem et al., “Analyzing Patient Experiences Using Natural Language Processing: Development and Validation of the Artificial Intelligence Patient Reported Experience Measure (AI-PREM),” BMC Medical
Informatics and Decision Making 22 (July 15, 2022): 183, https://doi.org/10.1186/s12911-022-01923-5; David B.
Kurland et al., “A Bibliometric Analysis of Patient-Reported Outcome Measures in Adult Spinal Deformity, and the
Future of Patient-Centric Outcome Assessments in the Era of Predictive Analytics,” Seminars in Spine Surgery 35, no.
2 (June 2023): 101032, https://doi.org/10.1016/j.semss.2023.101032.
162. Saif M I Alkhaaldi et al., “Medical Student Experiences and Perceptions of ChatGPT and Artificial Intelligence:
Cross-Sectional Study,” JMIR Medical Education 9 (December 22, 2023): e51302, https://doi.org/10.2196/51302;
Marjan Hoseini, “Patient Experiences with AI in Healthcare Settings,” AI and Tech in Behavioral and Social Sciences
1, no. 3 (2023): 12–18, https://doi.org/10.61838/kman.aitech.1.3.3; E. Parimbelli et al., “A Review of AI and Data
Science Support for Cancer Management,” Artificial Intelligence in Medicine 117 (July 2021): 102111, https://doi.
org/10.1016/j.artmed.2021.102111.

80
understand the relationship between selected variables, researchers use AI to infer patterns from
data and to give shape to models that represent both explicit and implicit features in the data.163
Natural Language Processing (NLP) is a set of techniques that automate understanding of what
humans mean when they use language to express themselves to one another. Patients’ own
descriptive language—how they express qualities of their experience to other people—is a source
of ground truth for PROs. Because of this, NLP is at the center of many AI methods used with
PROMs.164 While NLP makes use of both AI and non-AI tools, the focus of this review is on AIbased NLP approaches, where learning is automated, and understanding proceeds directly from
raw text rather than a traditional statistical approach, where understanding is derived using
rule-based systems.
Why are PROMs important?
There is a limit to what objective measurements in healthcare can do. PROMs, as subjective,
unmediated reports shared by patients, fill in the gaps that other methods cannot assess, such as
“pain levels, patient experience, motivation, human factors, [...] and health priorities.”165
• PROMs are patient-centered by design: they aim to measure the outcomes that are most
meaningful to patients, and to make sure that patient experiences, symptoms, and quality of life are taken seriously in treatment decisions.
163. Hema Sekhar Reddy Rajula et al., “Comparison of Conventional Statistical Methods with Machine Learning in
Medicine: Diagnosis, Drug Development, and Treatment,” Medicina 56, no. 9 (September 8, 2020): 455, https://doi.
org/10.3390/medicina56090455.
164. Emre Sezgin et al., “Extracting Medical Information From Free-Text and Unstructured Patient-Generated Health
Data Using Natural Language Processing Methods: Feasibility Study With Real-World Data,” JMIR Formative Research 7 (March 7, 2023): e43014, https://doi.org/10.2196/43014; Zhaohua Lu et al., “Natural Language Processing
and Machine Learning Methods to Characterize Unstructured Patient-Reported Outcomes: Validation Study,” Journal
of Medical Internet Research 23, no. 11 (November 3, 2021): e26777, https://doi.org/10.2196/26777; Jin-ah Sim et al.,
“Natural Language Processing with Machine Learning Methods to Analyze Unstructured Patient-Reported Outcomes
Derived from Electronic Health Records: A Systematic Review,” Artificial Intelligence in Medicine 146 (December
2023): 102701, https://doi.org/10.1016/j.artmed.2023.102701; Chao Fang et al., “Natural Language Processing for
Automated Classification of Qualitative Data From Interviews of Patients With Cancer,” Value in Health 25, no. 12
(December 2022): 1995–2002, https://doi.org/10.1016/j.jval.2022.06.004.
165. Tyler Raclin et al., “Combining Machine Learning, Patient-Reported Outcomes, and Value-Based Health
Care: Protocol for Scoping Reviews,” JMIR Research Protocols 11, no. 7 (July 18, 2022): e36395, https://doi.
org/10.2196/36395.

81
• PROMs provide opportunities for open dialogue between healthcare providers and patients, promoting shared decision-making and better care coordination.
• When implemented successfully, PROMs invite patients to become active participants in
their healthcare journey rather than passive recipients of treatment. This can help build
trust between patients and providers, especially among populations who have experienced mistrust or neglect from the healthcare system in the past.
• Using PROMs can reduce healthcare costs by identifying early signs of disease progression or treatment failure, allowing for timely adjustments and early interventions.
The literature covered in this review is not limited to studies using specifically identified PROM
instruments. The scope is purposefully expansive in its inclusion of other forms of patient-generated health data (PGHD), such as unstructured data sourced from electronic health records,
apps, fitness trackers and wearable devices, social media, and other settings. We use data both
actively and passively to express ourselves, and to represent our experience. Research has shown
that patient-reported outcomes can be inferred from unstructured clinical notes and social media
using AI techniques such as natural language processing (NLP).166 It has also been suggested
that passively collecting PGHD from apps and devices provides meaningful context and validation for PROMs while reducing the burden on patients that is often associated with actively
completing PROM questionnaires.167 Moreover, the introduction of AI analytical methods has
been indicated as opening the way for integrating diverse and unstructured PGHD with validated PROMs.168
166. Don Roosan et al., “Artificial Intelligent Context-Aware Machine-Learning Tool to Detect Adverse Drug
Events from Social Media Platforms,” Journal of Medical Toxicology 18, no. 4 (October 2022): 311–20, https://doi.
org/10.1007/s13181-022-00906-2; Elham Dolatabadi et al., “Using Social Media to Help Understand Patient-Reported
Health Outcomes of Post–COVID-19 Condition: Natural Language Processing Approach,” Journal of Medical Internet Research 25 (September 19, 2023): e45767, https://doi.org/10.2196/45767; Amir Abbas Tahami Monfared et al.,
“Stakeholder Insights in Alzheimer’s Disease: Natural Language Processing of Social Media Conversations,” ed. Joshua
Grill, Journal of Alzheimer’s Disease 89, no. 2 (September 13, 2022): 695–708, https://doi.org/10.3233/JAD-220422.
167. Carissa A. Low et al., “Estimation of Symptom Severity During Chemotherapy From Passively Sensed Data: Exploratory Study,” Journal of Medical Internet Research 19, no. 12 (December 19, 2017): e420, https://doi.org/10.2196/
jmir.9046; Nicole A. Maher et al., “Passive Data Collection and Use in Healthcare: A Systematic Review of Ethical
Issues,” International Journal of Medical Informatics 129 (September 2019): 242–47, https://doi.org/10.1016/j.ijmedinf.2019.06.015.
168. Heather S. L. Jim et al., “Innovations in Research and Clinical Care Using Patient-Generated Health Data,” CA:
A Cancer Journal for Clinicians 70, no. 3 (May 2020): 182–99, https://doi.org/10.3322/caac.21608.

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PROMs, as media, are changing, interdependent objects. The instruments will change, and so
will the tools and frameworks for validating them. This review seeks to identify the conditions
of a possible future in which researchers and clinicians continually learn how best to listen to
patients’ experiences.
Methods
Search terms
Four databases were searched for literature published in English in the past five years
(2020/1/1—2024/4/10) for which the terms “patient-reported” and/or “patient-generated” appeared in the same context with “artificial intelligence” and/or “machine learning” and/or “natural language” in the title, abstract, and/or keywords.
Database: Query:
Web of science AB=(“patient-reported” OR “patient-generated”) AND
(“artificial intelligence” OR “machine learning” OR “natural
language”)
n=403
Scopus TITLE-ABS-KEY ( ( “patient-reported” OR “patientgenerated” ) AND ( “artificial intelligence” OR “machine
learning” OR “natural language”))
n=857
PubMed ((patient-reported[Title/Abstract]) OR (patientgenerated[Title/Abstract])) AND ((artificial intelligence[Title/
Abstract]) OR (machine learning[Title/Abstract]) OR (natural
language[Title/Abstract]))
n=510
ArXiv patient-reported outcomes (all fields)
AND artificial intelligence (all fields)
n=24
Total search results: n=1795

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Remove duplicates n=934
Filter out references that do not have the intersection of patient-generated health
data and artificial intelligence as an objective focus or outcome (hand-review of
abstract, title, and keywords)
n=308
Remove references with no full-text paper available: n=15
Total references included n=537
Full-text analysis
The widespread availability of large language models (LLM), with capacity for summarization
and topic modeling that far exceeds earlier statistical approaches, has prompted interest in the
(partial) automation of systematic literature reviews.169 It has been shown that automation using
LLMs works best when applied to full-text analysis, a task well-served by a tendency to produce
generalized variations and transformations of source data.170 For the Results section of this review, AI analysis was used to synthesize a summary of the objectives, questions, ongoing concerns and imperatives related to the design of AI-PROMs, according to the available literature.
Nomic AI’s GPT4All library was selected because of its stable and well-maintained open source
codebase, its integration of multiple state-of-the-art large language models (LLMs) from different
developers, its active community of contributors, and its straightforward integration with retrieval-augmented generation (RAG) techniques.171
Retrieval-augmented generation (RAG) is an AI technique that combines the natural language
169. Xufei Luo et al., “Potential Roles of Large Language Models in the Production of Systematic Reviews and Meta-Analyses,” Journal of Medical Internet Research 26 (June 25, 2024): e56780, https://doi.org/10.2196/56780; Iain J.
Marshall and Byron C. Wallace, “Toward Systematic Review Automation: A Practical Guide to Using Machine Learning Tools in Research Synthesis,” Systematic Reviews 8, no. 1 (December 2019): 163, s13643-019-1074–79, https://doi.
org/10.1186/s13643-019-1074-9.
170. Qusai Khraisha et al., “Can Large Language Models Replace Humans in Systematic Reviews? Evaluating GPT
‐4’s Efficacy in Screening and Extracting Data from Peer‐reviewed and Grey Literature in Multiple Languages,” Research Synthesis Methods, March 14, 2024, jrsm.1715, https://doi.org/10.1002/jrsm.1715.
171. “Nomic-Ai/Gpt4all,” C++ (2023; repr., Nomic AI, July 15, 2024), https://github.com/nomic-ai/gpt4all.

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understanding and generative capacity of pre-trained large language models (LLMs) with the
fidelity of a database query. Given a selection of material—texts, images, instructions, etc—a
RAG tool learns embeddings, or relational representations of material fragments, which it then
stores as a body of knowledge.172 For the purposes of this review, embeddings were created from
the total search results using the open source software tool Nomic Embed v1.5.173
Colloquially described as ‘chatting with the documents,’ Interacting with a RAG tool consists of
selecting which documents to use as context, submitting prompts and receiving responses. While
RAG tools respond reliably when questioned about the subject matter contained within the
documents, the technique performs poorly when asked questions about the documents themselves—so-called metadata questions, such as comparing one paper to another, or characterizing
patterns or distributions across the set of documents. Prompts like “select publications from the
provided documents that investigate the integration of artificial intelligence and patient-generated health data” return a mixture of actual citations and plausible but non-existent (hallucinated) paper titles, authors, summaries, and digital object identifiers (DOIs). On the other hand,
prompts like “provide a summary of the consequences of integrating PROMs with AI, in terms of
patient experience, and in terms of sociotechnical effects” return a clear outline without errors or
hallucinations, complete with a list of traceable citations from the provided context. At times, a
RAG model will lose the scope of the whole context, and may focus on a small subset of papers.
Hyperparameters, factors that adjust the model’s scope and variability with regard to its own
internal parameters, can have an outsized effect on the quality, fidelity, and creativity of responses. In short, the experience of using a RAG tool for insight into a body of knowledge is less a
factual exercise than a tactical one: iteration, synthesis, views of the landscape. Value is added,
but actual reading for comprehension and comparison is not replaced.
For the full-text analysis, two pre-trained large language models (LLMs) were used: “Nous Hermes 2 Mistral DPO,” a 7 billion parameter model trained by Mistral Al and fine tuned by Nous
172. Patrick Lewis et al., “Retrieval-Augmented Generation for Knowledge-Intensive NLP Tasks,” in Advances in
Neural Information Processing Systems, vol. 33 (Curran Associates, Inc., 2020), 9459–74, https://proceedings.neurips.
cc/paper/2020/hash/6b493230205f780e1bc26945df7481e5-Abstract.html.
173. “Unboxing Nomic Embed v1.5: Resizable Embeddings with Matryoshka Representation Learning,” accessed July
5, 2024, https://blog.nomic.ai/posts/nomic-embed-matryoshka.

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Research on the OpenHermes-2.5 dataset, and “Llama 3 8B Instruct,” an 8 billion parameter
model trained by Meta.174 The text generated by each model was fact-checked, compared, and
synthesized by hand. The Results section below draws in part from the generated results.
Discussion
Methodology
A narrative review is a non-systematic methodology intended to address “topics that require a
meaningful synthesis of research evidence that may be complex or broad and that require detailed, nuanced description and interpretation.”175
To understand scientific literature as literature, a body of research may be productively examined by using subjective, interpretive tools rooted in the social sciences and humanities. These
tools offer situated research perspectives that take into account both general and particular
factors at work in specific interactions between material artifacts and culture.
In particular, theories of social constructivism—understanding the social, experiential, and interpersonal foundations of knowledge—are essential to this review’s methodology. More specifically,
the methods used here align with the theory-driven research approach of feminist science and
technology studies, and draw from the various methodologies that have developed out of this
broad interdisciplinary research tradition.176
Due to the emergent nature of the topic at hand, both AI and PROMs are treated here as sociotechnical assemblages, forged in the ongoing and messy interrelationships between culture and
174. “NousResearch/Nous-Hermes-2-Mistral-7B-DPO,” safetensors, April 15, 2024, https://huggingface.co/NousResearch/Nous-Hermes-2-Mistral-7B-DPO; “Meta-Llama/Meta-Llama-3-8B-Instruct,” safetensors, April 18, 2024,
https://huggingface.co/meta-llama/Meta-Llama-3-8B-Instruct.
175. Javeed Sukhera, “Narrative Reviews: Flexible, Rigorous, and Practical,” Journal of Graduate Medical Education
14, no. 4 (August 1, 2022): 414–17, https://doi.org/10.4300/JGME-D-22-00480.1; Maria J. Grant and Andrew Booth,
“A Typology of Reviews: An Analysis of 14 Review Types and Associated Methodologies,” Health Information & Libraries Journal 26, no. 2 (June 2009): 91–108, https://doi.org/10.1111/j.1471-1842.2009.00848.x.
176. Lucy Suchman, “Feminist STS and the Sciences of the Artificial,” in The Handbook of Science and Technology
Studies, ed. Edward Hackett et al., 3rd ed (Cambridge, Mass: MIT Press, 2008), 139–64.

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technology, mechanism and context, representation and power.
By tracing these interrelationships as emergent and in-process, this review seeks “affirmative
engagement” with the complex field of forces and interests at play in the development of AIPROMs. Karen Barad describes this abductive process as diffractive analysis, in contrast to
the prioritization of “disclosure, exposure and demystification” that characterize overtly critical
methods.177 Similarly, methodologies such as material semiotics (or material-discursive analysis)
describe direct engagement with the materials under analysis as a means for studying technology, culture, and material as inseparable parts of a whole.178
Finally, any analysis of AI-PROMs’ incremental movement towards “that dream science/technology of perfect language, perfect communication,” as Donna Haraway has put it, must carefully
avoid falling under the sway of a manufactured impartial, or general, perspective.179 Capturing
the unique ways AI and PROMs may fit together, in the collision of automated pattern-matching with first-person testimony (often offered under the duress of illness), requires a methodology
that holds generalization and personalization together in mutually constitutive roles: individual
patient experiences collectively cohere into patterns, and these patterns create meaning for individual patients in return.
Context
The relationship between AI and PROMs is a growing and potentially transformative field.
At the center are AI technologies that aim to make sense of how humans express, reason, and
exchange knowledge, such as NLP and large language models (LLMs). The recent acceleration of
these AI technologies has seen the emergence of journals dedicated to the applications of AI in
healthcare, such as NEJM AI and Artificial Intelligence in Medicine. For these journals, as well
as the research under review here, the literature is addressed to a readership that spans disci177. Karen Barad, “Diffracting Diffraction: Cutting Together-Apart,” Parallax 20, no. 3 (July 3, 2014): 187, https://
doi.org/10.1080/13534645.2014.927623.
178. John Law, After Method: Mess in Social Science Research, International Library of Sociology (London ; New
York: Routledge, 2004).
179. Donna Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective,” Feminist Studies 14, no. 3 (1988): 575, https://doi.org/10.2307/3178066.

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plines within the medical field, hinting at the emergence of new hybrid practices that encompass
informatics and healthcare services, while catering to a range of specializations such as oncology
and orthopedics.
In clinical trials of AI health technologies, PROMs are used as both input (data to learn from)
and output (predictions made). Outcomes evaluated over time using PROMs, from postoperative depression to substance use disorder, are being studied as predictable patterns that can be
addressed preventatively.180 While the use of PROMs in clinical trials of AI health technologies
is increasing, the use of PROMs in the assessment of AI health technologies as a trial endpoint
falls behind the rate of PROM use across all clinical trials.181 Designers of AI health tools must
maintain a broad understanding of how the tools impact patients’ quality of life. Integrating
PROMs with AI health tools, whether functionally or as an assessment, helps to ensure that the
patient perspective remains central to both clinical research and healthcare delivery.
Results
A narrative of continual learning and optimization, with patient-centered outcomes as the primary endpoint, runs throughout the literature as a hallmark of AI-PROMs. AI excels at identifying
patterns and correlations between features, both implicit and explicit. Integrating the predictive
pattern-matching aspects of AI with the patient-centered nature of PROMs may help to support
personalized care and advance the goals of patient-centered medicine. For example, designing
AI-supported surveys that can dynamically adapt to match individual patients’ needs and capacities, patients may become more engaged participants in their own care. In turn, more engaged
patients may contribute actively to the collection of data about health status and interactions
with healthcare systems, leading to more accurate, reliable, and culturally sensitive PROM in180. Natalie B. Baxter et al., “Predicting Persistent Opioid Use after Hand Surgery: A Machine Learning Approach,”
Plastic & Reconstructive Surgery, September 29, 2023, https://doi.org/10.1097/PRS.0000000000011099; Aviram M.
Giladi et al., “Patient-Reported Data Augment Prediction Models of Persistent Opioid Use after Elective Upper
Extremity Surgery,” Plastic & Reconstructive Surgery 152, no. 2 (August 2023): 358e–66, https://doi.org/10.1097/
PRS.0000000000010297; Yining Lu et al., “Machine-Learning Model Successfully Predicts Patients at Risk for Prolonged Postoperative Opioid Use Following Elective Knee Arthroscopy,” Knee Surgery, Sports Traumatology, Arthroscopy 30, no. 3 (March 2022): 762–72, https://doi.org/10.1007/s00167-020-06421-7.
181. Finlay J Pearce et al., “The Role of Patient-Reported Outcome Measures in Trials of Artificial Intelligence
Health Technologies: A Systematic Evaluation of ClinicalTrials.Gov Records (1997–2022),” The Lancet Digital Health
5, no. 3 (March 2023): e160–67, https://doi.org/10.1016/S2589-7500(22)00249-7.

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struments that better reflect patient experience.
Note: The indented content below has been hand-edited from AI-generated responses (refer to
the Methods section above for details).
What an AI-PROM would do:
Improve diagnostics and make more accurate measurements:
AI presents the opportunity to contextualize PROs “with a large number of clinical,
biological, and psychological data.”182 AI algorithms using NLP can analyze text-based
PROM responses, such as open-ended questions, to identify themes and patterns that
may not be captured by traditional survey methods. AI algorithms can analyze vast
amounts of medical data quickly and accurately, leading to earlier and more accurate diagnoses. This not only improves patient outcomes but also reduces the time spent in the
diagnostic process, minimizing stress and discomfort for the patients.
Assist in research and evaluation:
PROMs are already used as an outcome in clinical trials to assess the effectiveness of
treatments, interventions, and health services. AI-PROMs may extend this by contributing to the iterative improvement of PROM design. By analyzing response patterns, AI
tools may be used to design PROMs that are more effective at capturing patients’ experiences, while reducing the burden of lengthy questionnaires. Furthermore, AI-PROMs
may help guide the design of clinical trials, identifying key patient-reported outcomes,
predicting sample sizes required for statistical significance, optimizing study protocols,
and analyzing results to determine whether interventions produce minimum clinically-important differences (MCID). Additionally, AI-PROMs can help identify areas for ongoing
improvement in treatment quality by highlighting disparities and monitoring trends in
PROs.
Improve patient-provider communication:
182. Elena Bignami, Serena Celoria, and Valentina Bellini, “Surgical Outcomes and Patient-Centred Perioperative Programs,” Journal of Clinical Monitoring and Computing 37, no. 6 (December 2023): 1641–43, https://doi.
org/10.1007/s10877-023-01057-7.

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AI-PROMs may facilitate communication between healthcare providers and patients,
showing clinicians a more comprehensive and context-rich representation of patient
needs, providing cross-cultural and multilingual support, and assisting in timely input
from providers on patients’ survey responses.
Be available in real-time, all the time:
A core value proposition of AI-PROMs is automation, in the form of fast, round-theclock support from chat-based AI health assistants, symptom trackers, disease monitoring and management tools. Utilizing AI-PROM systems to attend to patients’ symptoms,
quality of life, and other health outcomes in real-time may enable more effective disease
management, as well as improved patient outcomes and experience.
Support shared decision-making:
AI-PROMs may help guide the process of shared clinical decision making, providing
actionable insights into patients’ symptoms, quality of life, values, medical history, and
treatment outcomes, while also making health information legible and accessible to patients in alignment with their needs and preferences,
Conduct data analysis:
Collecting large-scale PROM datasets that are inclusive of diverse patient populations—
from sources such as electronic health records (EHR) and patient registries (repositories
of anonymized information related to specific populations or diseases)—will improve AI
model performance and generalizability. Analysis by AI-PROMs may help to identify
patterns and trends that may not be apparent through traditional statistical methods,
such as identifying minimum clinically-important differences (MCID). AI analysis can be
applied to a wide range of data, including extracting PROs from unstructured clinical
narratives, as well as mapping the extracted PROs for phenotyping and clustering.
Produce predictive models:
By analyzing historical patient data, AI can predict potential health issues before they
manifest or worsen. Early intervention based on these predictions can significantly improve patient experience by preventing complications and reducing the need for invasive treatments. Incorporating PRO data as an input for AI health models ensures that
patients’ perspectives, not just clinical observations, inform the features from which the
algorithm makes its predictions.
Support personalized care:

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By integrating PROs into AI-driven decision support systems, healthcare providers can
develop tailored treatment plans that better address patients’ unique needs and preferences, as well as assist with patients’ health literacy and information needs. For instance,
AI analysis may identify patterns that indicate the presence or impact of traumatic
experiences on a patient’s health outcomes. This information can then be used to inform
healthcare providers about potential trauma-related issues and help them tailor care
plans accordingly, incorporating trauma-informed practices.
Support efficient resource allocation:
AI can help optimize resource allocation in healthcare systems by predicting patient
needs and allocating resources accordingly. This ensures that patients receive the appropriate level of care when they need it, reducing wait times and improving their overall
experience.
Reduce administrative burden:
By automating administrative tasks such as appointment scheduling, billing, and record
keeping, AI can free up time for healthcare professionals to focus on direct patient care.
This not only enhances the quality of care but also improves the overall experience by
reducing wait times and increasing face-to-face interaction with providers.
Contribute to risk stratification:
AI algorithms can identify high-risk patients based on various factors (e.g., medical history, lifestyle), enabling targeted interventions and improved patient experience.
Current barriers to widespread adoption of PROMs in clinical research that may be
addressed with the integration of AI tools:
Resource constraints:
While collecting, analyzing, and interpreting traditional PROM data takes time and requires trained personnel, AI-PROMs may reduce administrative work by assisting healthcare workers with administrative tasks such as summarization and routine analysis.
Limited specificity:

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Validated PROMs may not be widely available for certain conditions or populations. AI
may help to speed up validation processes, as well as to supplement existing PROMs by
extracting patient-reported outcomes (PROs) from unstructured text such as interviews
and clinical notes.
Cultural and linguistic barriers:
To provide meaningful data, PROMs need to be culturally sensitive and translated into
languages spoken by diverse patient populations. AI may help capture linguistic context
and nuance across languages.
Patient burden:
Completing PROMs can be difficult and time-consuming, especially for people who are
already experiencing fatigue and high cognitive load: “Questionnaires can be burdensome
to complete, especially when multiple domains of patient health are assessed at the same
time.”183 Computerized adaptive testing (CAT) adjusts the survey instrument to simplify
the test-taking process in the moment, matching patients’ capacity while preserving test
validity.184 Passive data collection—through devices and apps, for instance—is another
low-impact source of patient-generated health data that can provide context for PROMs
through data-driven analysis without contributing adversely to patient burden.
Data quality concerns:
Incomplete or inaccurate data collection can compromise the validity of results. AI methods for working with sparse data, filling in gaps, and generating synthetic or proxy data
may help glean meaningful patterns, even from partial results.
Ongoing concerns that may inhibit adoption of AI-PROMs:
Lack of standardization:
183. Conrad Harrison et al., “Maximizing the Potential of Patient-Reported Assessments by Using the Open-Source
Concerto Platform With Computerized Adaptive Testing and Machine Learning,” Journal of Medical Internet Research 22, no. 10 (October 29, 2020): e20950, https://doi.org/10.2196/20950.
184. Conrad J. Harrison et al., “Computerized Adaptive Testing for the Oxford Hip, Knee, Shoulder, and Elbow
Scores: Accurate Measurement from Fewer, and More Patient-Focused, Questions,” Bone & Joint Open 3, no. 10 (October 1, 2022): 786–94, https://doi.org/10.1302/2633-1462.310.BJO-2022-0073.R1.

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While separate guidelines exist for the use of PROMs and AI in clinical trials (such as
SPIRIT-PRO and SPIRIT-AI, respectively), standards for their integration remain to
be developed.185 Furthermore, while individual PROMs undergo validation for how they
measure different aspects of patient experience, there is no interchangeable standard
for PROMs such as there is for other forms of health data, such as EHR. This makes it
challenging to compare results across studies, and may contribute to a lack of clarity on
actionable steps following assessments provided by PROMs.
Entrenched behaviors in clinical settings:
While integration of PROMs data implies a reorienting of clinical relationships to better
align with patients’ subjective experience, in practice they often “function more as a tool
to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices.”186
Patient privacy and confidentiality concerns:
Using electronic PROMs, as with the sharing of any sensitive data, carries risks of
exposure and theft. The interpretability, explainability, and accuracy of AI algorithms,
especially when making critical decisions affecting patient care, is a primary concern.
Difficulty understanding how AI decisions are made can lead to mistrust among patients,
clinicians, or researchers.
What AI-PROMs must do:
Be lightweight:
Assessment processes should be streamlined or made adaptive, with fewer questions,
more focus, more presence. If PROMs are to be further integrated into clinical workflows,
they must reduce workload for patients and providers alike.
Be responsive:
185. Melanie Calvert et al., “Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The
SPIRIT-PRO Extension,” JAMA 319, no. 5 (February 6, 2018): 483, https://doi.org/10.1001/jama.2017.21903; Samantha Cruz Rivera et al., “Guidelines for Clinical Trial Protocols for Interventions Involving Artificial Intelligence:
The SPIRIT-AI Extension,” Nature Medicine 26, no. 9 (September 2020): 1351–63, https://doi.org/10.1038/s41591-
020-1037-7.
186. Joanne Greenhalgh et al., “Functionality and Feedback: A Realist Synthesis of the Collation, Interpretation and
Utilisation of Patient-Reported Outcome Measures Data to Improve Patient Care,” Health Services and Delivery Research 5, no. 2 (January 2017): 1–280, https://doi.org/10.3310/hsdr05020.

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Make results, interpretations, and communication available to patients, caregivers and
healthcare providers quickly. In addition to real-time availability, AI-PROMs must be
adaptable and accessible.
Be transparent:
Be able to explain or assist in interpretation of analyses and results. Offer clarity on
what to do next, and assist in shared decision making. Focus on improving trust and
equity, and acknowledge the limits of automated decision making.
Advance healthcare equity:
AI-PROM systems must account for social determinants of health and other factors
affecting health disparities, promoting more equitable patient outcomes, and leading to
more complete understanding of the burden of disease, in alignment with research goals.
Involve patients:
Patients’ perspectives and experiences should be included throughout the process of
developing and evaluating AI-PROMs, to ensure that AI health technologies align with
their needs and values.
Speak all languages:
Learn from data in whatever form it comes in, with multimodal understanding. Combining PROMs with other types of health-related data (e.g., medical imaging, genomic data)
may create more comprehensive AI models. Furthermore, learning relationships from
a wide array of contexts and across languages—structured or unstructured text, voice
audio, data from wearable devices and EHR, visual diagrams and graphic aids, social
media, and so on.—may contribute to better accessibility and health literacy, provide a
more comprehensive understanding of patient experiences and outcomes in context, and
a more intuitive grasp of what is meaningful to patients.
The hopeful promise of integrating AI with PROMs is that tools which offer broad leaps in
adaptability, pattern-matching, personalization, real-time responsiveness, and continuous learn-

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ing will lead to better patient-provider communication, increased trust, and, for patients, a sense
of ownership and motivation in managing one’s health. Taken together, these factors may contribute positively to a range of outcomes, including alleviating patient stress, better data collection and interpretation, and better-informed clinical decision-making.
Fundamentally, AI-PROMs must extend the core principle of PROM instruments, that of validating patient experience. Care providers who use AI-PROMs should center patient concerns by
acknowledging that their symptoms and health concerns are legitimate and worthy of attention,
showing understanding and compassion for what they are going through, and confirming that
their experiences are real and will not be dismissed or minimized.
(Unanswered) Questions
A selection of (unanswered) questions, generalized from the literature:
• How can we tell if AI-PROMs are designed and implemented successfully?
• How can AI systems be designed to incorporate and analyze patient-reported outcome
measures effectively?
• What types of PROMs would best suit the target population for a specific study or intervention, considering factors such as disease severity, age range, cultural background, etc.?
• Are there existing validated PROMs that can be used in the context of AI-based interventions, and how do we ensure their applicability to the given scenario?
• How can patients be engaged as partners in designing, testing, and implementing AIbased healthcare solutions that incorporate their experiences and perspectives?
• How has value-based healthcare influenced the development of AI in healthcare?

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• What proxies are available—for experience? For expertise?
• What are the impacts of AI-PROMs on patient outcomes, satisfaction, and overall
healthcare costs?
• How feasible and effective it is to integrate AI-PROMs into existing clinical workflows?
To adjust treatment dynamically, based on patterns in patient-reported feedback?
Conclusion
The current landscape for both AI and PROMs is characterized by increased adoption and
efforts to increase standardization and interoperability. While challenges remain, the benefits of
using AI and PROMs to improve patient outcomes and healthcare quality make them each an
essential component of modern healthcare.
The integration of AI with PROMs has shown promising results in enhancing healthcare services, improving patient outcomes, and optimizing treatment decisions.
By applying AI tools to the analysis of PROMs, researchers gain a more holistic understanding
of the complex relationships between diverse inputs (such as demographics, medical history, and
treatment plans) and outputs (patient experiences and quality of life). This information may
enable healthcare providers to make better-informed decisions that prioritize patients’ individual
needs and preferences. Additionally, using PROs as output from AI-based predictive tools may
help to support interventions and treatment decisions aligned with desired health outcomes.
Conversely, the use of AI algorithms that incorporate PROM data as an input ensures the
inclusion of patients’ perspectives in AI-based predictions. This persistent validation of patient
experience may help to bridge gaps between patients and healthcare providers, facilitating more
transparent communication about patient experiences and preferences. If more collaborative,
intersubjective relationships between patients and providers is possible, then better-informed
decision-making, improved trust in the healthcare system, and a more equitable distribution of

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resources may follow.
Suggestions for future work:
Further review of the literature should clarify the emergence of shared research methodologies
and regulatory frameworks for AI and PROMs used together. Possible methods include bibliometric analysis and subject matter expert interviews that contextualize the work through different disciplinary lenses. Lines of inquiry would seek to identify the shared assumptions that unify
research and regulatory efforts: How do the assumptions motivating research and regulation
diverge? How collaborative is the research, between and within disciplines? How ‘common’ are
the questions, objectives, and methods? Where is the research taking place—how geographically
or institutionally diverse are the researchers?
Ethics: Continue evaluation of the ethical implications of using AI and PROMs together, with
particular attention to the underlying ethical assumptions that ground issues around patient
autonomy, privacy, data ownership, algorithmic transparency, and the potential exacerbation of
health disparities due to biased algorithms.
Safety: Develop guidelines and best practices for protecting patient privacy when using PROMs
data as training data for AI models.
Real-world implementation: Conduct pilot studies or small-scale implementations of AI-PROM
systems in real-world clinical settings to evaluate feasibility, effectiveness, and scalability. A
literature review that uses a realist synthesis methodology would provide guidance for implementing and evaluating the technologies in real-world settings. Realist here means somewhere
between positivism (everything can be cleanly measured) and constructivism (everything is a
sociotechnical construct). Synthesis means tracing lines of relation: unpacking the relationship
between contexts, mechanisms, and outcomes.187 What works in one context may work differently in another. The context of the research includes which questions are asked, the way they are
187. Geoff Wong et al., “RAMESES Publication Standards: Realist Syntheses,” BMC Medicine 11, no. 1 (January 29,
2013): 21, https://doi.org/10.1186/1741-7015-11-21.

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asked, and where the motivation for the research originates, for example, from within medical,
engineering, social science, or administrative settings. The kind of medicine (e.g. oncology), the
particular patient population, and the characteristics of the patient-generated data all contribute
meaningfully to the overall research context. A realist synthesis approach is intended to produce
secondary interpretations of primary evidence that “illuminate issues and understand contextual
influences on whether, why and how interventions might work.”188 What are the contexts and
settings where AI and PROMs work best together? What are the differences in how AI-PROM
mechanisms work across contexts? What contextual factors may inhibit successful implementation of AI-PROMs?
Multidisciplinary collaboration: Foster collaborations between clinicians, researchers, data scientists, industry experts, and regulatory bodies to develop solutions for integrating PROMs with
AI, and to build consensus around standardized protocols and guidelines.
Standardization: Establish common standards for collecting, processing, and integrating PGHD
with AI. Make use of existing secure standards for data interoperability such as FHIR.189 Harmonize standards for access and ethical shared use of AI-PROMs across studies, countries, and
fields of study. Support for innovative development of new AI-PROM tools must also facilitate
open research, continuously improve the validity of results, and protect patients’ privacy.
Apply AI-PROMs to new domains: AI-PROM systems may be particularly well-suited to address unmet needs in areas such as mental health, palliative care, and rare diseases. AI-PROMs
may be used to assess the effectiveness of interventions or treatments that do not have established PROMs measures, as well as to expand the scope as to what kinds of outcomes can be
measured and evaluated.
188. Wong et al., “RAMESES Publication Standards: Realist Syntheses.”
189. Chantal N.L. Beutter et al., “Quality of Life as an Indicator for Care Delivery in Clinical Oncology Using FHIR,”
in Studies in Health Technology and Informatics, ed. Rainer Röhrig et al. (IOS Press, 2021), https://doi.org/10.3233/
SHTI210058.

98
Fig 18. Features of a hypothetical AI-PROM as a flow diagram. Patients, providers, and AI are all in a shared loop,
with personalized, adaptable, efficient, accessible, and effective care as the intended goals.
Figures:

99
Bibliographic Notes
Total references included: n=537
Unique sources (Journals, Books, Conferences, etc): n=318
Individual authors: n=3863
Publications by year:
2020 67
2021 112
2022 129
2023 158
2024 (1/1—4/10) 71
Publications by type:
peer-reviewed articles 410
reviews 69
conference papers 17
book chapters 10
protocols 21
preprints 6
editorials 4

100
Research Areas
Research Area Count
Machine Learning 261
Health Informatics 162
Oncology 112
Orthopedics 58
Medical Informatics 51
Health Care Sciences & Services 49
Surgery 40
Neurosciences & Neurology 25
General & Internal Medicine 23
Sport Sciences 23
Computer Science 21
Engineering 19
Gastroenterology & Hepatology 12
Cardiovascular System & Cardiology 11
Science & Technology - Other Topics 11
Public, Environmental & Occupational Health 10
Rheumatology 9
Psychiatry 8
Anesthesiology 7
Research & Experimental Medicine 7
Obstetrics & Gynecology 6
Otorhinolaryngology 6
Dermatology 5
Mathematical & Computational Biology 5
Pharmacology 5
Rehabilitation 5
Business & Economics 4
Respiratory System 4
Biotechnology & Applied Microbiology 3
Genetics & Heredity 3
Radiology, Nuclear Medicine & Medical Imaging 3
Urology & Nephrology 3
Biochemistry & Molecular Biology 2
Cell Biology 2
Chemistry 2
Instruments & Instrumentation 2
Nutrition 2
Biomedical Social Sciences 1
Dentistry 1
Emergency Medicine 1
Epidemiology 1
Geriatrics & Gerontology 1
Government & Law 1
Information Science & Library Science 1
Nursing 1
Ophthalmology 1
Psychology 1
Statistics 1
For all references included in the search, one or more research areas was identified according to abstract, keywords,
author biographies, and the publishing journal. These research areas show a diverse and intersecting range of fields,
with a majority falling under the broad categories of applied science and technology (e.g. machine learning, computer
science, etc), medicine (e.g. oncology, orthopedics, etc) and interdisciplinary (e.g. health informatics, medical informatics, health care sciences and services, etc.). Far fewer results fell within the broad categories of natural sciences (e.g.
cell biology, chemistry) or social sciences (e.g. government and law, business and economics). The arts and humanities
were not represented as a research area within the literature. Note that some references, interdisciplinary in scope,
have been categorized as pertaining to multiple research areas.

101
Quorum quantula pars sit imago dicere nemost
[We cannot say what part of them is the image]
- Lucretius “De Rerum Natura” 4:174
SELF-WRITING

102
Fig. 19. Image description: Illustration showing fine white lines on a black background, converging into symmetrical
geometric patterns that ambiguously resemble spider webs, or snowflakes, or something in between.

103
[...]
This is my illness narrative. Imagining the kind of model I would like to be represented by, I
turn away from what Ebony Coletu encloses with the term functional life writing—applications,
surveys, requests for assistance, etc—and towards more open approaches to writing about my
own life, with an emphasis on associative and immersive descriptions of affect, experiences, and
observations.1
Where functional life writing imposes an institutional requirement for coherence,
this life writing, in the form of a lyric essay, draws knowledge from experience through poetic
sense-making, for the writer and reader alike.
2
Life writing, as a therapeutic process, is aimed at
eliciting “an understanding of how both the physical and social environments” an individual engages with may “impact and influence health and wellbeing.”3
Folding together thick description
of everyday routines (the activities of daily living) with the careful assembly of mental images
and lines of inquiry, life-writing is a practice of subjective relation-making, articulation of interior attitudes, and attunement to patterns.
[...]
1. Ebony Coletu, “Introduction Biographic Mediation: On the Uses of Personal Disclosure in Bureaucracy
and Politics,” Biography 42, no. 3 (2019): 467, https://doi.org/10.1353/bio.2019.0055: “‘documents of life’
redefine the scope and accessibility of rights [...]. High-stakes situations that link paperwork to politics
make it easier to see how blocked access to aid, protection, or rights can make a theorist out of anyone
determined to end structural exclusion.”
2. Brenda Dervin, “Sense‐making Theory and Practice: An Overview of User Interests in Knowledge
Seeking and Use,” Journal of Knowledge Management 2, no. 2 (December 1, 1998): 36, https://doi.
org/10.1108/13673279810249369: In Dervin’s grounded theory of “sense-making,” knowledge is to be made
and used, rather than treated as a fixed and finite object. If accuracy or fact-making are important, they
will emerge as aspects of the sense-making process, but other strategies for making and using knowledge
are given space as well: “Knowledge is the sense made at a particular point in time-space by someone.
Sometimes, it gets shared and codified; sometimes a number of people agree upon it; sometimes it enters into a formalized discourse and gets published; sometimes it gets tested in other times and spaces
and takes on the status of facts. Sometimes, it is fleeting and unexpressed. Sometimes it is hidden and
suppressed. Sometimes, it gets imprimatured and becomes unjust law; sometimes it takes on the status
of dogma. Sometimes it requires reconceptualizing a world. Sometimes it involves contest and resistance.
Sometimes it involves danger and death.”
3. Francis Cadd, “Life-Writing,” in The Routledge Companion to Health Humanities, ed. Paul Crawford, B.
J. Brown, and Andrea Charise (Abingdon, Oxon ; New York, NY: Routledge, 2020), 276.

104
1.
I was dead. I have new feelings. I will describe them here.
I am an analyst who specializes in feeling. My spectrum is deep. Experience has taught me to
be circumspect when I assign types, cautious when I classify (emotions that are my own, shared,
or belonging to others), to patiently delay drawing borders, and to attend to the maintenance of
boundaries with care.
One feeling might be related, through very different kinds of connection, to many other feelings
and I might not see the shape of a pattern yet. I don’t complain; I don’t explain.
If the fruit is too ripe, or not ripe enough, I feel disgusted. Making categories to draw out the
limits of sense is work that life does very naturally for itself. This is to say, categories lend coherence to uncertain, unbearable situations.
When the play of free interpretation between us becomes too difficult, we invoke shared categories to take the place of our privately indexed realities. I don’t always want to be unrecognizable.
Sadly I cannot authenticate myself.
This conversation wears the voice of analysis: How standardized will our indexes become? What
forms of freedom of association do we want to preserve and which are no longer useful? Who will
decide these matters?4
Here are my sources: bodily, textual, visual; authenticated experiences,
guided by the living and the dead.
I am apprehensive about the naming of categories because of the mist between names and
things. I trust that choice of names is neither a real nor a moral choice: I can’t internalize it
completely, so I turn to more distributed and unsettled ways of thinking. Authentication is
4. Geoffrey C. Bowker and Susan Leigh Star, Sorting Things out: Classification and Its Consequences, Inside Technology (Cambridge, Mass: MIT Press, 1999). 8.

105
group work. You and I, thinking together. I am responsible to you. I am anxious about a choice
which is not one to be made alone.
My child always wants to know if this or that plant is poisonous. We identify together. This
wind is amazing. I saw birds making a nest out of spiderwebs.
2.
There is the odor of passion fruit ripening at various speeds on a wood table. There is a warm
bright breeze that disturbs cloth curtains. Some of this will be of interest to some of you. Breeze
and odor push together in small cyclones of sweet floral metallics and detergent-soaked wood. To
be dead, or having otherwise lost trust in the future, is to become pure presence, poetry’s lie: all
options and no choice.
I feel at home here, in this distributed and unsettled way of knowing. I am qualified. I make
mistakes in my accent, my timing, my dialect is off. I am, nevertheless, aware of the line of questioning that precedes me and will continue after me. I will show where I am in this continuum. I
will acknowledge those whom this continuum belongs to. I know. I am diffuse. I am a world-traveling poet. The world will not stop if I make a mistake.
I love to apologize. I accept the risk that I will be expelled from my community. I travel with the
problem. At the same time, love undercuts all risks inherent in the genre of apology.
I misread “security” as “serenity.”
3.
Here are the arcs in my life and here is where they intersect in the present moment. As old as a
child can be, my hair was removed and my head supported by metal pins. Anesthesia brought
higher brain function to a rest and I ceased. I am presenting this to you from a vertical perspective. Seen from above, the subject is unfurled and pressed down to reveal what comes together

106
as a continuous landscape.
I have a talent for cancer, I am told.5
Epilepsy, for me, is caused by a tumor in the part of my
brain that resolves images. Removing part of this tumor leaves scars in the folds of my brain and
under my hair. I am dyslexic. I collect, with expert guidance, periodic images of the tumor and
its scars to understand how they grow, and how they change me. Scars are alive. My position
changes.
Blood is not the only thing that circulates. A more visible tumor, on my neck, is caused by lymphoma, a blood cancer which is always already in every part of my body, in my bones, and brain
even. I get very good chemotherapy. Studies show this treatment will eliminate my cancer, and
that it will make me appear more visibly sick for a limited time. Again there are periodic images
which are necessary in order to understand. Chemicals are measured and cells are counted. Each
sample represents a whole. Surveys are presented on a tablet for me to complete, asking me to
recall the frequencies of feelings, to reconstruct the days, to question myself, to give values to
unmeasurable things. There are gaps in my memory and in my language. I lose the point of it.
Death is a guide.
I will be disciplined about my intentions. I will be an authentic reader. I will keep my knives as
sharp as scalpels. How good it will be to cut so easily, so quickly, so deeply! I will cite my sources well, I will observe context and continuum: What is around, what is before, what is after.
How books are arranged. How gaps are filled. I will shut no part of myself off from participation.6
I will read with all my senses.
As I follow the survey’s prompts a question arises in my mind, which I put into a letter that will
go unanswered by its recipient: Did you ever read my words, or did you merely finger through
them for quotations which you thought might valuably support an already conceived idea concerning some old and distorted connection between us? This is not a rhetorical question.
7
5. Octavia E. Butler, Lilith’s Brood (New York: Aspect/Warner Books, 2000), 34.
6. I. A. Richards, Principles of Literary Criticism (London: Routledge, 2004), 72.
7. Audre Lorde, “An Open Letter to Mary Daly,” in Sister Outsider: Essays and Speeches (Berkeley:
Crossing Press, 1984), 76.

107
Distorted connections begin within. How natural it is to feel disgust when confronted with the
shape of guts. Intestinal kinks. Leaking bodies. A compact form barely holds. Effluence, overflow. I understand the ugly resonance here with boundaries, with borders. Where wholes are
constantly reconfigured as parts / adding dimensions of possible worlds / a pattern of patterns /
not immediately actualized.8
Contain yourself.
4.
In the city where I grew up, I touched every surface. I found entrances in quiet alleys, collapsed
doorways cut from white marble. I held a dead friend’s journal of disintegration close to protect
against hesitation, to embrace the sharpening of boundaries: I let my hands become weapons, my
teeth become weapons, every bone and muscle and fiber and ounce of blood become weapons, and
I feel prepared for the rest of my life.9
I feel this as a confrontation with limits: the limit of life,
the limits of quantity, weight, coherence. Being material, being limited. Cutting and finite, not
infinite at all.
From afar, it appeared as if my friend were writing about living with death as a guide. But now
that I am close I can see his writing itself is a gesture that cuts across living and dying: a mode
of desiring that allows us to see and feel beyond the quagmire of the present, José Muñoz would
go on to write.10
I trace the difference in this and find, again, the vertical perspective, as if suspended, looking at
all of this from somewhere up. Later, I miss another friend’s call: I had become almost completely abstracted.
8. Luciana Parisi, “XENO-PATTERNING: Predictive Intuition and Automated Imagination,” Angelaki 24,
no. 1 (January 2, 2019): 95, https://doi.org/10.1080/0969725X.2019.1568735.
9. David Wojnarowicz, Close to the Knives (New York: Vintage Books, 1991), 81.
10. José Esteban Muñoz, Cruising Utopia: The Then and There of Queer Futurity, 10th Anniversary Edi- tion, Sexual Cultures (New York: New York University Press, 2019), 1.

108
5.
A small quiet drone has been circling the air above our rent-controlled house for the past hour.
My partner observes that in this small part of the sprawling city, the neighborhood where we
have lived half our lives, the drone’s presence indicates the speculations of real estate.
In the rural town where my family has been living through pandemic times, there is a natural
spring that has been enjoyed for thousands of years. Sacred healing water, free by nature to all.
For the past hundred and fifty years or so it has been enclosed as a private bathhouse and pool,
its waters bottled and sold in plastic jugs. You can pay to become a member and you can enjoy
it with other members. What’s the morality of this. I run into the tribal historic preservation
manager in early summer, by the store that sells wildcrafted herbs and fly-fishing gear. She protects meaningful sites and artifacts on behalf of the people whose ancestors enjoyed the spring
long before settlers arrived, the people whose collective name means “people of the waters that
are never still,” the people who the settlers murdered or forced to leave, in waves of coercion and
eviction unfolding over generations. She asks if I’d been to the pool yet, if I’d tasted the water.
It’s incredible, she says, her partner and child agreeing. It’s true, I find the water to be clear and
cool and warmed by the sun and you can drink it straight from the earth. Protection, she shows
me, in the shape of our shared enjoyment.
I don’t need a drone to see what a drone sees. Its vertical perspective is always available to me,
irreversibly stamped on my imaginary version of the big picture.11 I compose a grid of flat, scrolling frames to make sense of the dilated surface far below me. I face a world of distorted connections.
A coalition-builder, an activist from my parents’ generation described this pattern of movement,
the ground shifting and exchanging beneath her, as the playful act of traveling between worlds:
11. Hito Steyerl, “In Free Fall: A Thought Experiment on Vertical Perspective,” E-Flux Journal, no. 24
(April 2011): 1: “Pilots have even reported that free fall can trigger a feeling of confusion between the self
and the aircraft. While falling, people may sense themselves as being things, while things may sense that
they are people.”

109
an exchange of loving perceptions, an open embrace of her multiple selves.12 It’s also the perspective of free fall. Moving towards earth against the friction of wind.
6.
New feelings manufacture new expressions, my face moves and holds in unfamiliar ways that
make me more or less recognizable depending on the day. When I am less recognizable I join
with other off-screen voices, outside of citation, in demonic grounds. I was dead once, and there
are definitely moments when I am not sure I’m no longer dead.
A, B, C, D, E, F, L, M, N, O, P
Why does the alphabet have the sequence that it does? I know there are letters missing. Every
word is a fossil.
7.
Whom can I trust? Would I recognize trust if I felt it? I am beginning to think that all connections are necessarily, normally, naturally distorted.
Which is to say, feelings are relationships. The once-abundant time I have spent conjuring links
between thoughts, images, and emotions collapses into scarcity. Each act of searching, seeking,
inquiring, and probing is imbued with a preciousness. It fits an ephemeral pattern.
I change tabs to check the grammar of “whom can I trust” vs. “who can I trust?” and I am delivered 6 Subtle Signs That You Can Tell Someone is Trustworthy:
1. They don’t share others’ secrets
2. They never say “I’m not supposed to be telling you this…”
12. Maria Lugones, “Playfulness, ’World’-Traveling, and Loving Perception,” in Pilgrimages Peregrinajes:
Theorizing Coalition Against Multiple Oppressions, Feminist Constructions (Lanham, Md: Rowman & Littlefield, 2003), 110–38.

110
3. They show consistency
4. You can count on them when needed
5. They tell you things straight up
6. They respect peoples’ time
I’m not supposed to be telling you this, but traveling between worlds without love is arrogant.
Arrogant perception is failure of identification, where all others exist by virtue of their usefulness. It is the systematic disintegration of whole persons by the perceiver, grafting the substance
of their servants to themselves.
13
The smell of ripe passion fruit becomes overwhelming. Those who spoke the local language
called it the fruit that serves itself. Five hundred years ago, passion fruit was a pedagogical tool:
each lobe of the flower representing a wound in the passionate death of G_d.
I am afraid that synthetic odors and flavors manipulate my senses so completely I have fallen
out of touch with the real fruit. This is a shallow dread. I am not that into technology but I get
it. I prefer a caveat, I don’t trust the seamless continuity required to make predictions. I am in
the midst of a thicket of dependencies, I am discrete; interdependent, alone.
My favorite medicine is chimeric, semisynthetic: rituximab, like any other monoclonal antibody,
is a large, Y-shaped protein that binds itself to foreign bodies and marks them for elimination.
Grown by a transgenic mouse who has been given a talent for cancer, the protein is humanized
to cross back into my species, where it marks my own B-cells as other. Those mutated murine
eyes give me my ethnographic point of view.
14
Writing myself into a place, a field, a persona, I look up and down and from side to side. The
sun is warm, the air is fragrant. I am skeptical and careful. In the grammar above, the open
question “whom?” is the object of trust. In this case, trust requires an object, even if it is a gap
13. Lugones, “Playfulness, ’World’-Traveling, and Loving Perception,” 112.
14. Donna Haraway, Modest_Witness@Second_Millennium. FemaleMan_Meets_OncoMouse: Feminism
and Technoscience (Routledge, 1997), 52.

111
to be filled, a caveat. Something required is missing. Still, a notion of completeness is required
before we can say “missing.”
I write about the changes I had observed when death became my guide: I am learning to speak
my pieces, to inject into the living world my convictions of what is necessary and what I think is
important without concern for whether or not it is understood, tolerated, correct or heard before.
The world will not stop if I make a mistake.
15 I intend to hold this thought of world-stopping
in my mind for a while before I continue. Where else could I hold it? The world is unstoppable,
with death as my guide.
To be clear, world-stopping is a flavor of world-building. World-traveling is another. In the late
afternoon, decaying light bleaches the curtain a distribution of miniature suns.
8.
I hear that free-swimming larvae of tropical corals move toward reef sounds when they return
from the open ocean.16 They listen to know where to settle, pulled from far away by noise. They
seek a louder world. Again at a distance, plants respond to the sound of leaves being chewed,
secreting particular chemicals. They do not respond in the same way to songs or wind.17 We
segregate our fruits and vegetables depending on whether they emit, or are sensitive to, ethylene
gas. Apples and bananas go in bags so they won’t speak to each other, so they won’t listen: Let’s
get ripe. Passion fruit, too, emits measurably large quantities of ethylene gas.
At the café by my house, I’m reading about stochastic parrots, a silly name for synthetic language models.18 These models produce seemingly coherent conversations, but they do not, as we
15. Audre Lorde, The Cancer Journals, Penguin Classics (New York City: Penguin Books, 1980), 56.
16. Mark J. A. Vermeij et al., “Coral Larvae Move toward Reef Sounds,” ed. Steve Vollmer, PLoS ONE 5,
no. 5 (May 14, 2010): e10660, https://doi.org/10.1371/journal.pone.0010660.
17. H. M. Appel and R. B. Cocroft, “Plants Respond to Leaf Vibrations Caused by Insect Herbivore
Chewing,” Oecologia 175, no. 4 (August 2014): 1257, https://doi.org/10.1007/s00442-014-2995-6.
18. Emily M. Bender et al., “On the Dangers of Stochastic Parrots: Can Language Models Be Too Big? 🦜,” in Proceedings of the 2021 ACM Conference on Fairness, Accountability, and Transparency (FAccT
’21: 2021 ACM Conference on Fairness, Accountability, and Transparency, Virtual Event Canada: ACM,
2021), 610–23, https://doi.org/10.1145/3442188.3445922.

112
might say, communicate. True coherence requires mutual recognition, which the parrots lack.
I look up from the article, recognizing a friend, who reminds me that our fleeting attempts at
mutual recognition block what we might think of as totalizing coherence. When she and I communicate with each other we are both aware that we are sharing, and we can know the limits
of our sharing. Communication is a jointly-constructed activity of modeling each other’s mental
state. All technology is for communication.19 Even if what you communicate to me doesn’t seem
to make sense I will interpret it.
Language gives objective form to my senses. Words help me to feel. At this point my friend
cautions me to be mindful of the slippage between categories of alarm and real harm. What is
at stake? A failure to recognize where our mutual thresholds lie means the one category has
become the other: a false alarm causes real harm, an unnecessary trigger. We make an outline
of the consequences together, in order to place our trust in the future. I come to see that this
means, among other things, to lovingly perceive change and the instability of representations, as
6 Subtle Signs That You Can Tell Representations Are Unstable:
1. The world as I am describing it, both as memory and as presence, will have changed
2. People I don’t know will read this, and the people I do know will have changed
3. The meaning of the language I have used, however carefully, will have changed
4. The relationships between the readers of this text and the world as I am describing it
will have changed
5. The relationships between myself, the language I have used, and my experience of both
memory and presence, will have changed
6. The relationships between myself, the language I have used, my experience of both memory and presence, the people who read this, and the world as I am describing it will have
changed
19. Ariana Reines, A Sand Book, First U.S. Paperback Edition (Portland: Tin House Books, 2020), 403:
“TECHNOLOGY IS FOR COMMUNICATION / TECHNOLOGY EVOLVED SOLELY FOR THE PUR- POSE OF DIVINE COMMUNICATION / ALL ITS OTHER FORMS ARE BYPRODUCTS”

113
It gets better: All of this writing takes place in time. I write only when it is absolutely necessary.
Today I wrote nothing.
20 I inhale wood smoke with the smell of ripe passion fruit. It’s ambient at
night.
9.
I find joy in moirés, multiphonics, iridescence, polyrhythms, and other readily sensible metaphors for holding or sensing more than one position. Metaphors break down under mindful analysis: a moiré falls under the umbrella term ‘z-fighting,’ as a struggle in the dimension that moves
from eye to horizon. Multiphonics, like all harmonic series, imply a fundamental frequency as
their basis. Iridescence is a structural trait. Polyrhythms depend on an eventual closure, a unit
of common repetition. I was smiling at you and then I realized you were a stranger.
I catch a glimpse of the skull clamp and take note of these blunt waves which pass through my
lower abdomen, and across the edge of my hairline. Behind my eyes. It is a taut fact that the
skull clamp clamps skulls. For the reason of slicing skin, peeling it back to bone. Drilling precise holes, clamping again, then cutting with a saw made especially for the purpose. By precise
intent, through repetitive use, everything and everyone has its purpose.
This hardware, this sensation, this body. I search for the brand name printed in silver on the
edge of its white metallic arm. Search results return images of even more abject products from
the same manufacturer. Their spinal surgery bed which bends and twists the unconscious body
in order to give access to the points of incision. The articulated arm with alligator clips for pinning folds of flesh in place. There is an inhuman economy to their directness: all body.
I only get the feeling from images of the skull clamp, also found under the sterilized term ‘cranial stabilizer.’ When a royal blue, athletic-looking foam support is added, the feeling is gone. I’m
not interested in a headrest. Not resting. What is a head?
20. Daniil Kharms, Today I Wrote Nothing : The Selected Writings of Daniil Kharms, trans. Matvei Yan- kelevich (Overlook Duckworth, 2007), 120.

114
10.
Walking down the stairs from the projection booth to the screening room, I am made aware of
a cone of blue light projecting outwards a meter or so from the back of my head. On the narrow
end, the diameter of my carefully sewn scar. On the wide end, a fringe of pale yellow-white and
magenta light, a spectrum that swings as I move my head from side to side. The cone holds its
unshakeable, orthogonal orientation to my skull.
I love scars. I was dead. My pride in showing you is too much.
I watch an IMAX movie of brain surgery: close images of a port being drilled into a shaved section of scalp, a tear in the sac that surrounds the brain, pulling back inner layers that resemble
spider webs, tumor tissue that looks like crystals of mold or fat. Every frame is multiple stories
tall. I don’t feel anything while watching, or immediately after. Three days later, I am obsessed
by how every plane of my body is oriented, so pungently aware of having a front, back, and sides
as if I were made of boxes.
11.
Face down on the examination table. A biopsy needle extends from my upper hip bone, through
a dimple in my back, to the oncologist’s proud gloved hand as they demonstrate the accuracy
of their technique to a colleague. I am immobilized, failing to pivot on a stuck center of gravity.
This act of extraction is one way to bring bone marrow to the surface. This is the reason we
have dimples, he explains half-joking, to show where the needles go.
I can’t talk about pain without talking about categories: subtle differences or nuances (despite
their similarities) that may be of importance to a patient who is trying desperately to communicate to a physician—and memory (to forget the experience would render it indiscriminate,

115
unrecognizable).21 A pain not recognized is no pain at all.
22
12.
I visit an old acquaintance who lives by herself in an apartment downtown. She has been frustrated in her attempts to apply for grants from the federal government, in part because the login
to the funding portal appears to be in my name (I had helped launch the nonprofit she now
manages). My acquaintance has mobility issues related to her auto-immune disease and the nonprofit’s offices are at the top of three flights of stairs. She is ready with the organization’s mission, its dedication to inclusion, its provision of social good. I accept her offer of matcha. I am at
a loss for words, my emotions are blocked. I remember disgust: how the symptoms of the world
persisted long after our encounter, in the shape of a barrier, a locked portal and too many stairs.
However much time I spent going over the text, how would I know if I had understood what I
read?
I am outlining systems for the reconstruction of activities and experiences.23 This is to understand how people spend their time and experience their lives. This is to better understand what
biases we carry when we categorize and remember. This is, furthermore, to understand how we
come together around coherent and all-permeating concepts such as ‘quality of life’ in the face of
asymmetrical life expectancies and standards of living.
13.
An ordered list of all the ways there are to tell you “I was dead.”
21. Ronald Melzack, “The McGill Pain Questionnaire: Major Properties and Scoring Methods,” Pain 1, no.
3 (September 1975): 278, https://doi.org/10.1016/0304-3959(75)90044-5.
22. Daniel C. Dennett, “Why You Can’t Make a Computer That Feels Pain,” Synthese 38, no. 3 (1978):
437.
23. Daniel Kahneman et al., “A Survey Method for Characterizing Daily Life Experience: The Day Re- construction Method,” Science 306, no. 5702 (December 3, 2004): 1776–80, https://doi.org/10.1126/sci- ence.1103572.

116
As for the question behind the questions, my friend at the café offers: “How civilized do I want
to be?” And so I become a form made up of blank spaces to be dutifully filled in or left capriciously empty. A building with windows that crack open in special patterns to promote
cross-ventilation. A sparse rhythm that throws a body into or out of balance. Freedoms of association I want to preserve, and freedoms that are no longer useful.
14.
The street outside my window traces the floor of a canyon rushing from hills to flatland. From
three dimensions into two. I hear a pair of owls calling to one another, one’s voice is low-pitched,
the other’s higher. They share the same pattern, in their respective registers. A thrust, quick
pulses, deep insistence: hut huh huh huuuh huuuh. Each time, the sequence is initiated by the
low caller. If the response from the high caller comes, it comes quickly. Beyond owls I hear the
dullest of engines rumble, flattening itself across the basin. How much is call, how much is response?
Death loses its meaning. In a pattern made up of spiderwebs and snowflakes ambiguously blending at their margins. How much is spun, how much is crystal?
15.
We can’t find the source of a smell with our fingertips.
Why do my veins choose to collapse?
Leaning against the wall, I hate how waves of bass move through the architecture into my soft
tissue. I didn’t choose to resonate like this but I’m so tired.
I will relay to you a lesson I learned during a visit to the morgue of a teaching hospital in Paris:
When one is overcome by the presence of death, touch the corpse. This stabilizing contact, as a
gesture of relation, serves uncountable purposes. Death becomes tangible, the cadaver resumes

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their humanity.
You press me gently to tell you more about the ghost, how he requires a specific orange flower,
and strawberry soda whose deep redness exudes vitality. There are other ghosts but they aren’t
aware. He communicates, with latency: an alert, then preparation to receive, the waiting, then
an image arrives. To reply, prepare, settle, choose a documentary image from one’s life, then
transmit the image. This is not my story to tell. What I mean to say is that this is local knowledge, to extract it from its deep embeddedness is to make it incoherent.
The oncologist says grimly: “I don’t have a microscope in my eye.”
16.
The only assignment the activist gives her students is to produce unedited images of their obsessions. For the document: arrogance, vulnerability, and nudes. Sometimes there is coercion. Does
the photographer learn to ask permission, alongside editing, printing, compression and its artifacts?
Images—in one’s fullest imagination of what depictions can be—become tools for realization,
both familiar and strange. At the center of any hopeful link between time and place, affect and
relation, the image introduces an agreement that either holds or breaks: Will I be seen as I am?
Will I see from a perspective that is not my own? It is almost not a choice. Subjects and viewers
either meet on level ground or they do not.
Felt through reflex, revulsion, attentiveness, discourse, and discovery, my consent governs my
awareness of sensation. It is as automatic as it is political as it is intimate. A prerequisite for
becoming legible, for having shared experience, consent is also an overture to pleasure, curiosity
and exploration. To consent is to be authenticated, for all who anticipate becoming a pattern, an
accumulation. I am reminded that in music, prediction creates a contract between performers,
and with listeners. Even as we consent not to be a single being, we consent to the predictability

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of forms.24
17.
The central conflict I experience with death as my guide is whether or not to trust the future.
To trust the future is to enjoy the free fall of gravity. When I lose trust in the future, I am compelled to intervene, I expend energy to keep vapor in the cloud.
I am organizing a film festival where the size of each digital file is savagely restricted, an awareness-building tactic. When the image is viewed as streaming media, its resolution and complexity are directly linked to its environmental cost. In one film I see a clip of a robed body in free
fall, clouds and sky and limbs and fabric and hair enmeshed within shifting and blocking compression artifacts.
Compression, even in its variability, is a process for making standard indexes from the stuff of
life—predictable forms—through decisions about what material to cut as redundant, useless,
dangerous, misleading, biased, obscene. I will identify those who do the work of deciding and
those who do the work of cutting.
Before the festival of compressed films, I read descriptions of images whose surfaces, so present
as to produce a haptic response, feel as if being touched on the eye. Making oneself vulnerable to
the image, reversing the relation of mastery that a sharp lens imposes, limits assert themselves
again.25 How much is cloud, how much of it is cloud’s image?26
24. Manthia Diawara and Édouard Glissant, “One World in Relation: Edouard Glissant in Conversation with Manthia Diawara,” Nka Journal of Contemporary African Art 2011, no. 28 (March 1, 2011): 5,
https://doi.org/10.1215/10757163-1266639: “It’s the moment when one consents not to be a single being
and attempts to be many beings at the same time. In other words, for me every diaspora is the passage
from unity to multiplicity.”; JJJJJerome Ellis, “The Clearing: Music, Dysfluency, Blackness and Time,”
Journal of Interdisciplinary Voice Studies 5, no. 2 (December 1, 2020): 224, https://doi.org/10.1386/
jivs_00026_1: “Musical and communicative synchronization both rely on prediction [...] a contract with the listeners. But I have other compositions [...] that are less predictable and thus establish a different
relationship […]”
25. Laura U. Marks, “Video Haptics and Erotics,” Screen 39, no. 4 (1998): 341.
26. Lucretius, The Way Things Are: The De Rerum Natura of Titus Lucretius Carus, trans. Rolfe Hum- phries (Indiana University Press, 1969), 124.

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Early morning light through passion vines throws tiny circles of light across the painted floor.
Do these miniature suns move? Do they show the effects of some force out there? Do my eyes
move in my face while I watch? Do I? The world? What keeps still long enough to be a frame?
These are morning questions. Oh, there they go: soft wind intervenes.
Images are important because they show how light is unceasing and dimensionless but still it
carries information. And if this is possible anything is.
18.
It happens that I am, in my deepest marrow, part vampire. An ethical and unreformed thief,
avoiding the cost of sunlight. Undying elite and full of care. Sadly my blood is contaminated. I
can’t donate I have a disease. Critique makes me weepy.
I’m not a cannibal but I am an exceptional listener.27 In the city I grew up in, my closest friend
took me to see a holy person who wrote a prayer for me on a piece of cloth. This person, with
whom I was unable to communicate directly, whose language was unknown to me, rolled the
prayer in hot wax, tied the small bundle around my neck with string, and instructed me (via
friendly translation) to keep it on until it fell off. This was all intended to protect me from too
much listening. I also carried a walnut in my pocket. Walnut, like a brain the size of a tumor. I
took drops of walnut essence under my tongue. I still hear all the frequencies, but I’m not literally losing my mind.
19.
Everyone in this place looks so familiar. Normal is a distribution and we’re in it. How can you
be sitting in the direct sun?
27. Eduardo Viveiros de Castro, Cannibal Metaphysics., trans. Peter Skafish (Minneapolis: Univocal, 2015), 142: “a process for the transmutation of perspectives whereby the “I” is determined as other through
the act of incorporating this other, who in turn becomes an “I” ... but only ever in the other—literally,
that is, through the other.” A cannibal eats another person and acquires their perspective. Cannibalism
refers here to a metaphysics of capture, exchanged perspectives, and representation.

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I want a metaphor for the difference between precision and accuracy that doesn’t rely on the
image of a target, on being punctured by arrows. Who wants to be opaque, difficult or silly?
Precision and accuracy stay independent of one another. This is a generic framework for approaching repair. There’s no other reasonable path. You can’t just drink juice and hope to get
better.
As I am seated, chemical heat on my inner arm, I receive transfusions of chemotherapy drugs—
doxorubicin, cyclophosphamide, vincristine (red, clear, clear). While I receive transfusion: stevia,
ginger, turmeric (leaf, root, root). As the poison takes hold: Chickpea flour shaped into a pancake. Green salsa on breakfast tacos. Cold brew coffee. It’s a disgusting walk from the clinic to
the café with my father, who is, as always, optimistic. To be clear, the experience of one foot in
front of the other is disgusting, the optimism is only ever ambient, I don’t touch it.
20.
It has been another bad week for thinking.
Several weeks since the last ripe passion fruit falls from the vine, now highly-structured flowers
crumple inwards and wilt in place. New leaves, identically rounded ellipses, differentiate from
one another as they grow. They transition to three lobes, then a distorted four, and finally a
mature five-fingered form. A new flush of fruit emerges, green and taut.
These results are ephemeral. Accuracy is how close a measurement is to the true or known value.
Precision is how close measurements of the same item are to each other. Accuracy means you
already knew. Precision happens before you know, or alongside knowing. Precision is relational,
accuracy is a matter of limits.
When no one can think, it’s time for passive synthesis. Sitting with habits and expectations,

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allowing inclinations to fall into place: a path is traveled, a route is recommended, a pattern is
discerned.
21.
To those of us taking part in the die-in, a group of passersby shout “you’re disgusting!” And to
these same passersby, those of us who are already dead shout wordlessly back: “we’re dissociating!”
With or without shouting, all mental life consists of components that can be split off and made
independent of one another, as I will now demonstrate.
22.
That feeling of reading while thinking.
Oozing into indeterminate space beyond the margins of the page, you become aware of something just out of reach: a colorful abstract pattern on the wall of the building outside of your
window. As daylight fades your focus slips, and you see this exterior image overlaid onto the
reflected interior of the room in which you remain seated. In the mesh of all this, your own eyes,
in the middle of your face, looking half at the page and half out the window.
23.
The recollected debris of any day.
My child is eating ripe guavas we’d picked from the tree that leans over the rusted chain link
fence separating us from our neighbors. In my hands are six or seven sweet pieces of fruit, and
I can’t carry any more. Bits of guava flesh, uniquely pink, thick with small hard seeds, stick to
their face and shirt. I remember thinking: this shirt is guava pink’s blue complement. We play
gratuitously with language: greeting one another repeatedly, we offer up sweet meaningless ques-

122
tions. We lay out details, real and imagined, of all the events which have passed between this
time—now—and the last time—then—we were together.
Light from an uncertain source casts a glow on the yellow house across from ours. Not Safety
Yellow, more Acid. A warning that is itself unsafe. Unmixed pigment. Bright shoots of flowering lavender make a frame for the light. I think it’s possible that there is an out-of-reach object
causing this, perhaps it is a reflection. I wave my hand to play along its borders. With eyes,
fingers, I love to trace the soft blur at the edge of unfocused light.
My point is that there are meaningful parts of life, interior or otherwise, ambiguous or certain,
that evade capture; where there is measurement, there is excess. Details overflow their container
and play across reflective surfaces; they remain incoherent yet firmly planted in context, irreducible.
My goal is to draw these meaningful but incoherent parts of life with lines that don’t hold a
shape, as evidence in support of obvious and incomplete thoughts.
I love but don’t trust narrative (I’m sick of my illness journey!) and I’m ok with machines, by
which I mean things to align, detune, compress, and transpose, to speak nearby.
28
My point is that belief in possibility is not possibility itself, and that, as I have read, the world
is not made up of our collective stories about the world, even if those stories are all we have to
share. Between the world and the stories, there is coherence.29 I write this for myself, to read and
reread over time; I write this to digest and distribute my thoughts, to confront difficulty; I write
this to compose myself, to write myself into being. It’s only a narrative but it’s also alive.
28. Trinh T. Minh-Ha, “Reassemblage,” in Framer Framed (New York: Routledge, 1992), 96.
29. Peter Brooks, Seduced by Story: The Use and Abuse of Narrative (New York: New York Review
Books, 2022), 26.

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24.
Let’s say, for the sake of argument, that each person carries a book in their head. A technology for assembling—not revealing—oneself, through the limiting effects of reading and writing,
it exists in the practice of disparate appropriation, the gathering of scattered fragments.30 This
book is unique to the person who carries it. It is a guide to guessing: how each of us knows, for
ourselves, what is at stake and what is likely to happen to us. It describes the varying certainties
of our beliefs. Rational as it may be, this book is always incoherent. It doesn’t make sense, and
it doesn’t stand in for the world.
I am reading a screaming book. In its scream I can hear the shape, size, and density of a resonating body, its mouth, teeth and tongue that give articulation to the piercing tone; lungs with
a particular capacity to hold air before it escapes through a vibrating throat. I have a picture in
my mind of the kind of creature this book is.
Information penetrates, like the sick warmth of radiation, or slips from mind without notice,
a moment free of attention. A changing, chemical smell, a rotten heaviness, sweaty hands on
hairless skin. The perception I find comfort in, you find unbearable. For each of my numerous
appetites and repulsions there can be equally numerous routes across, or views onto, the shared
landscape of my illness. How does this variation in itself take shape as understanding? Made
sensible, visceral, to be acted on?
By consensus, the technologies used to locate answers to questions of care consider biological,
psychological, social, and environmental evidence.31 Care providers use their tools of analysis to
listen beside deeply connected contexts; an assembly of machines for desiring, identifying, representing, repelling, paralleling, differentiating, rivaling, leaning, twisting, mimicking, withdrawing,
30. Michel Foucault, “Self Writing,” in The Essential Works of Foucault, 1954-1984, ed. Paul Rabinow
(New York: New Press, 1997), 209: Michel Foucault discusses this kind of self-writing, alongside and
intertwined with practices of listening and self-reflection, in his study of Seneca’s rules for self-knowledge
and self-care, as ‘hypomnemata’ (also written as ‘hupomnemata’, from the Greek Ὑπομνήματα, or ‘notebooks’).
31. Francesc Borrell-Carrió, Anthony L. Suchman, and Ronald M. Epstein, “The Biopsychosocial Model 25
Years Later: Principles, Practice, and Scientific Inquiry,” Annals of Family Medicine 2, no. 6 (November
2004): 576, https://doi.org/10.1370/afm.245.

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attracting, aggressing, warping, and other relations.
32 The process requires contact and presence,
so we sit, touching, beside the tools and beside each other.
25.
When I go in for treatment, I never pay the parking meter. I don’t owe anyone for this time.
Seated in the most comfortable chair, I play the slowest game of cards. I wear a perfume, a
custom scent mixed by a thoughtful friend to mask the chemical aroma of treatment. I smell of
resin, asphalt, and tar.
A nurse arrives to squeeze the syringe more steadily and watchfully. One of the drugs in my
treatment regimen, a semisynthetic plant extract named Vincristine, cannot be given by the drip
of a machine. Originally distilled from the Madagascar periwinkle, used for millennia to treat,
among other things, cancer; one ton of the plant’s leaves make an ounce of this drug, so now we
synthesize it.33 If it so much as slips from the vein it will tear through my body, dissolving skin
and internal tissue. Hollow out, chew through, erode, burn up, disintegrate.
Although I have since watched a 3D animation of its molecular structure rotating on-axis, the
model’s red, gray, and blue spheres and their connections do not explain to me this drug’s common effects: hair loss, difficulty walking, and the vaguely-defined ‘change in sensation’.
“Shall we sing a song together?” the nurse asks.
Hand in hand we go / to the land of the ill / to share in the shade / against assimilation
From where I sit in the cancer pavilion, adjacent to all the rest of what we call life, behind double-pane tinted windows, I can’t distinguish between what I hear as the sound of waves crash32. Eve Kosofsky Sedgwick, Touching Feeling: Affect, Pedagogy, Performativity, Series Q (Durham: Duke
University Press, 2003), 8.
33. Naghmeh Nejat et al., “Ornamental Exterior versus Therapeutic Interior of Madagascar Periwinkle
(Catharanthus Roseus): The Two Faces of a Versatile Herb,” The Scientific World Journal 2015 (2015):
1–19, https://doi.org/10.1155/2015/982412.

125
ing against land, or gusts of wind whipping against walls. I can’t tell the difference, and I can’t
locate the separateness of one repetition from the next.
26.
“Are you ok with music,” my host asks, holding the solid oak door open and gesturing for me to
enter. The question is besides the point, music is already playing, a live recording of a concert by
a band I don’t recognize.
“I love music,” I say, raising a pink cardboard box, “and I brought snacks!” Her home has been
recently remodeled, in good taste, clean rooms thoughtfully lit. Gauzy curtains obscure the view
to the desert garden outside the window. Free-standing display cabinets line one wall, thin glass
and old wood, from a different era.
I am seated at the kitchen table, my host retreats to a home office in the back of the house. My
attention wanders, I space out, listen. This is crowd-pleasing music: the performers pause, except
for a kick drum to keep the time. I imagine the singer crouched forward at the edge of the stage,
pointing his microphone symbolically at the audience, pulling their incoherent voices into a wave
of melody, stomping and clapping.
This melody, this musical figure that I hear in the inscrutable record of some performance somewhere by some group and some audience, is only repeatable. I wouldn’t say remarkable. There
is nowhere else it would go but to return in a loop. Its only option, following the rules set by its
first iteration, formed by all of the conditions that contributed to the possibility of that moment,
is to play again and again. I think of this as a musical fact, as I slice into a pastry and flakes of
crust fall to the table, again and again.
Speaking generally, people use containers—musical or otherwise—differently than machines do.
Repetition, I have heard, gives music its human touch, prompting listeners to distinguish artistry

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from randomness.34 Too much variation, on the other hand, is quickly interpreted by listeners as
inhuman, machine-like. The research shows humans care for musical figures that bear repeating,
while machines care for uncoiling, splayed-out nets of variability. Repetition and variation are
methods for us to explore, to apprehend, any terrain or enclosure, to draw lassoes around the
topos, to generalize the containers we use to think with.
As I listen, each frequency seeks permission before entering the room. Some harmonies are more
insistent in their formations, more militant. Some rhythms of course, as well as textures and patterns. To listen to these arrangements as militant is to hear them clearly as expressions of desire,
beyond the contours of needs and demands.35
A composer and architect, living and working in exile, had survived the worst effects of war in
the country he had been forced to leave. His music is characterized by individual events murmuring into a dense cloud before fusing back into discrete events again: gestures of tense repetition,
like setting the vibration of chains against the skin of a drum. The intended effect, he would say,
of this transition between event and cloud, was to apprehend traumatic memories as if feeling
one’s way across an incomprehensible landscape—death, cities flattened from the air, collapsing
buildings and dust-choked monochrome. Traumatic memories are not the same as sad memories.
In fact they may not be memories at all.36
Music, as the composer came to think of it, is best understood not from within the connected
experience of a generic crowd, but in taking the place of a solitary perspective. For any individual person, music is a way of behaving: when they think about or make music, they are behaving
musically.
Music is the feeling of becoming a whole person, even momentarily. It is the sensation of real34. Elizabeth Margulis, “Aesthetic Responses to Repetition in Unfamiliar Music,” Empirical Studies of the
Arts 31, no. 1 (2013): 45, https://doi.org/10.2190/EM.31.1.c.
35. Ultra-red, 10 Preliminary Theses On Militant Sound Investigation, Artists & Activists (New York:
Printed Matter, 2008), 3.
36. Ofer Perl et al., “Neural Patterns Differentiate Traumatic from Sad Autobiographical Memories in
PTSD,” Nature Neuroscience 26, no. 12 (December 2023): 2226–36, https://doi.org/10.1038/s41593-023-
01483-5.

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izing something. Music is something imagined, virtual, arising in thought, articulated in sound.
Dramatic situations, expressions of sadness, joy, and love are not universal attributes of music,
but particular and limited instances. Music is the gratuitous play of a child. Music is a model for
being and doing, a sympathetic drive. Finally, the composer writes, music is a catalyst. Just to
be in the presence of music is to allow for transformation.37
27.
I drive myself across the city to the quiet flatland, where the therapist works from home.
“Are you ok with music,” my host asks, holding the solid oak door open and gesturing for me to
enter. The question is besides the point, music is already playing, a quiet piece of dim jazz from
a portable speaker sitting on a low shelf behind her.
“Yes, of course,” I say, affecting a soft smile but stopping short of making prolonged eye contact.
I take hold of the heavy door and step onto the tiled floor. “Shoes off?”
Once inside, we move to a sectional sofa in the center of the room. I dig my fingers into the
coarsely woven cover. There is an abstract sculpture, or maybe a natural form—a skeleton?
Branches?—on top of the bookshelf behind my host, who sits to my left, their palms placed
weightlessly onto their thighs.
It’s my first visit to the somatic therapist and I’m very uncomfortable, in spite of every aspect of
our encounter being oriented towards comfort. I do not believe I am entitled to this treatment,
to this approach. I don’t want it. Repair of the whole body and mind just isn’t for me.
It is possible and necessary to communicate around experiences that overflow the container of
description.
It’s actually raining.
37. Iannis Xenakis, “Towards a Metamusic,” Tempo, no. No. 93. (Summer 1970): 3.

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28.
I wake up, slowly, on the nineteenth floor, looking north to the mountains shrouded in clouds.
Deep scratches criss-cross the glass by the handle of the sliding balcony door. What creature
made these marks?
29.
My point is that music—rhythm in particular—allows for different ways of moving through,
returning with, and coming together as patterns in time. Playing and listening to rhythms splits
my body in time.
I grow connected.
I am from a generation that found it interesting to follow strangers in the street.
There is no spirit more concrete than “do it yourself,” although now that I say it out loud it
sounds so mean.
30.
I’m on an island avoiding the ocean.
I barely recognize myself. I used to think that a bad mirror, scratched or greasy, was the ideal
for all metaphors to aspire to, because it evokes both the damage and the opportunity that misrecognition enacts. To be defaced. To see as if through a dim window, now clearly for the surface
it is.
For now, metaphors take the place of names. One symptom of the moment is an obsession with
transitions whose particular shapes are mapped, like varieties of catastrophe, in the shorthand
of generic forms: fold, cusp, swallowtail, butterfly, wave, hair, fountain. While some things (like

129
these names for shapes) are so tangible they cannot be taken as metaphors, they still give me
what a metaphor might offer: a piece of some other world, dropped into this world, to reveal the
touching correspondence of connection among aliens.
In my house we have been overusing the word “abject” to describe all types of situations and
positions. We need a new word for being thrown into the world. My family senses the ridiculousness of being unrecognizable, neither subject nor object. Animate, but unable to act. Visible,
but not legible—or is it the other way around? The painted metal door hangs open.
31.
I’m playing a card game my mentor is inventing. Some cards stand in for things that happen—
events or consequences, both good and bad. Other cards stand in for resources that one might
apply to mitigate the bad, or to capitalize on the good. The remaining cards represent the goals
of a particular group. As we play, we tell stories out of the events, resources, and goals. What
happened? What did we offer in response? What was this in service of? There is no way to win,
no system for collecting points, no desired outcomes, only a gesture by which we reach toward
alignment of our goals, sharing of our resources, and a common interpretation of how to process
what happens.
32.
I’m playing a card game my colleague learned from soldiers in the colonizer’s army. Its origins
are unclear, but there are many stories. The game moves quickly, and thinking is not rewarded.
Patience, and a willingness to give up on patterns, is key to winning. It’s not a military game.
33.
I remove details to make the description more generic. I am sitting in what I would call a plaza,
although it has been given a much more fabulous name by the benefactors. It’s unclear to me if

130
I live in a desert or not, and whether the assignment of desert status changes, and if so according to what system? I’m glad there’s a fountain, but what is the water for if not drinking? Or
bathing? Not for plants?
I’m obviously not the first person to thoughtlessly sit here, in the shade at the plaza’s edge,
listening around corners for filters and for what passes through, for the sounds of fountains and
voices, and how each body crossing in front of me casts its own shadow.
34.
In dry season, the fountain shatters: where water fell gently, tile lays cracked. The dull force of
hallucination is, as a pattern, a container without contents.
35.
Write your self. Your body must be heard.38
38. Hélène Cixous, “The Laugh of the Medusa,” trans. Keith Cohen and Paula Cohen, Signs: Journal of
Women in Culture and Society 1, no. 4 (1976): 880.

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Discussion
[...]
Here is an experiment in the explainability and interpretability of algorithms and imagination.
I use explainability and interpretability to mean different things. To interpret something is to
engage with how it works, to feel, play, and live with it. To explain something is to abstract from
it, and put it into reasonable terms that can be made sense of. Explanation makes use of common sense ideas about what’s possible and what’s reasonable. Interpretation, as I’m using it, is
the application of local knowledge, where ideas about reasonableness and possibility are contextual and contingent.
As views from a synthesized, vertical perspective, the text and images included here play loosely
with what Donna Haraway has famously described in her characterization of situated knowledges
as “the joining of partial views and halting voices into a collective subject position that promises
a vision of the means of ongoing finite embodiment, of living within limits and contradictions—
of views from somewhere.”39
As technical images, they call out first to the apparatus that produced them.40 As synthetic images they are both absent and present, “like the sound of the telephone deep in the ear.”41 Typified by Ingrid Hölzl and Rémi Marie, these are softimages, where “what was supposed to be a
solid representation of a solid world [...] a hard image as it were, is revealed to be something totally different, ubiquitous, infinitely adaptable and adaptive, and something intrinsically merged
with software: a softimage.”42
39. Donna Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial
Perspective,” Feminist Studies 14, no. 3 (1988): 590, https://doi.org/10.2307/3178066.
40. Vilém Flusser, Towards a Philosophy of Photography (London: Reaktion Books, 2000): 14.
41. Jacques Derrida, Specters of Marx: The State of the Debt, the Work of Mourning and the New International, trans. Peggy Kamuf, Repr, Routledge Classics (London: Routledge, 2011): 123.
42. Ingrid Hölzl and Rémi Marie, Softimage: Towards a New Theory of the Digital Image (Bristol: Intel- lect, 2015): 132.
SENTENCES ABOUT RIVERS AND CANCERS

132
Unstable, in-between, affective images. No exposure to light contributed to their making, imprinting instead “the “what” that fleets” of the model’s latent space.43 As a tangle of co-creation,
these images embed not only the logics of the model’s design, but also the work of training,
and the data used as links to ground truth, an assembly process that suggests stewardship of
interpretable patterns, not authorship. To produce the images, I fine-tuned the Stable Diffusion
text-to-image model with two new datasets, one of aerial photographs and the other of medical
images, and then used the prompt “a polluted river in the shape of a human body,” over and
over and over, editing a selection from the generated images.44
The fine-tuning technique I used is called LoRA, or Low-Rank Adaptation of Large Language
Models.45 Invoking the fine-tuned layers at the inference stage allows for attenuating between an
aerial perspective on a landscape, and a microscopic view of bodily interiors.
Multimodal AI models learn to represent meaningful relations (e.g. between text and image).
This pursuit of meaningfulness comes at the cost of interpretable ambiguity, particularly in the
margin between figure and ground, object and subject, or what we might recognize as point
of view, or coherent texture. Fine-tuning facilitates hybridity at a high level, and preserves a
margin of maneuverability before the image collapses into a certain meaning—in this margin,
you are invited to make interpretations. I worry about what will happen when interpretation is
not valued, when meaning is essentialized, and analysis is misunderstood to be a process of strict
and literal translation.
[...]
These sentences about rivers and cancers draw on personal experiences of cancer treatment and
care; the environmental and financial toxicities that precede and accompany illness; and the
enduring contaminations that cancer and its treatment produce.
43. Ahmed, S. “Orientations: Toward a Queer Phenomenology.” GLQ: A Journal of Lesbian and Gay Stud- ies, vol. 12, no. 4, Jan. 2006, pp. 565. DOI.org (Crossref ), https://doi.org/10.1215/10642684-2006-002.
44. “Text-to-Image,” accessed July 23, 2024, https://huggingface.co/docs/diffusers/en/api/pipelines/stable_diffusion/text2img.
45. Edward J. Hu et al., “LoRA: Low-Rank Adaptation of Large Language Models” (arXiv, October 16,
2021), http://arxiv.org/abs/2106.09685.

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The poem’s composition is informed by time spent living and working close to the Hoosic River in rural western Massachusetts, which flows through the ancestral lands of the Mohican, or
Muh-he-con-ne-ok: The People of the Waters that are Never Still. As the primary conduit of
runoff from throughout the region, this river is polluted, but not by any single source. “Nonpoint
source” pollution is impurity that cannot be traced to a single point of origin—a persistent,
ambient pollution; runoff, surging with stormwater, flowing into the river, contaminating the
groundwater; thick with petroleum and other chemicals, salts, human and animal waste, fertilizers, pesticides, heavy sand and silt.
The conditions of the living river are our conditions for research: a watery analysis, thinking
with bodies as pressurized wet salty things, to better understand conditions of interbeing, entanglement, and porosity—listening intently for nonpoint source pollution: seeping draining runoff
and sediment, and how rivers and bodies circulate together.
This hopeful arrangement offers listening perspectives onto the shared imaginary space between
rivers and cancers: from above and below water’s surface; where the flow breaks on rocks and
debris, where runoff drains into soil and streams; as a chorus of voices, spoken and sung; stories,
observations and meditations on the social, political, and ecological entanglements that compose
cancer as lived experience.
To listen to rivers in this way is to also problematize the way cancer is understood, as linked
to environments and inheritance. Cancers are very rarely attributed to a single cause or factor.
They are situational, interconnected, accidental, inevitable.
As Susan Sontag grappled with Illness as Metaphor, implicitly analyzing her own cancer experience through the lens of literary material, this text seeks an elucidation of, and liberation from,
the metaphors that prejudice common imaginaries surrounding cancer, for patients and caregivers alike.
To an extent, cancer is a common and relatable experience, one that creates and determines

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community. To an extent, all rivers carry the same water, touching multiple populations and territories in their winding paths. Cancer is both overrepresented and unmentionable (Sontag never
writes explicitly about her cancer); some rivers flow clear and drinkable, while many others convey spectral runoff into concrete channels.
The poetic text is a watershed holding many fragmented and interpolated sources which are cited in Appendix B of this dissertation (Sentences About Rivers and Cancers (Sources)). In drawing together this particular braided stream of source texts—illness narratives, scientific publications, and theory work across disciplines—the aim is to get at the shared conditions, coherence,
and correspondence between rivers and cancers. Direct citation, memory, and observation collage
together, as tributaries that flow inwards and spill outwards into oxbow lakes, as tumor strands
that in their mutation converge and diverge.
A polluted river in the shape of a human body, repeated views. Each of the images accompanying this text was generated using a diffusion-based AI model, fine-tuned for a confusion of
satellite and medical imagery. Learning from the land, learning from bodies. I am a landscape,
whose visible layers indicate deforestation, drought, development. I am a test result, whose
stained-color biomarkers draw attention to where resources are spent. The generative model used
here de-emphasizes semantic understanding (the naming of visible objects, their narrative, their
composition) in exchange for optical clarity (fidelity to texture, artifact, evidence). This is the
closest I can bring automation to ambiguity, in the precise region of sense where pain is a fluorescent feeling.
46
Variations of speech and water, each flowing at a particular place and time, each with their
distinctive rhythms, are quoted here as compositional guides: in counterpoint, in mutual support
and suspension, as carrier and modulation. This form of word-for-word poetic interpolation is
known as a cento, held together in this case as if tentatively laying hands onto the malignancy of
a tumor. A tumor cento.
46. Anne Boyer, The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Ex- haustion, Cancer, and Care (Farrar, Straus and Giroux, 2019): 159.

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Cancer, along with autoimmune diseases, repeatedly enacts self-destruction within a toxic
world—where contaminant is both self and indistinctly other. Cancer is the body, at a scale that
is simultaneously personal and globally implicated. This is contamination as collaboration as
Anna Tsing writes, where purity is not an option. This exchange of influence between body and
world is also a form of what Gerald Vizenor called survivance—not a reaction by one against the
other, but a mutual action, an enduring presence: without collaborations, we all die.
47
47. Anna Lowenhaupt Tsing, The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins (Princeton: Princeton University Press, 2015): 28.

136
I encourage you to feel—
to misunderstand everything
especially the lightness of memory
and the weight of voice.
Work

137

138
We traverse land that appears to be level; the tightness in the
thighs that comes with ascending a long grade, the looseness
in the feet that indicates descent. Blood does not pulse
through your tissues in great tidal surges, it flows within a
diffuse net of permeable vessels, a capillary bed of creeks,
streams, forks, and tributaries that lie over the land.

139
Your newly found skill of walking downhill will help you
locate it. Focus on the points, not the lines that connect them:
how many nodes? Ded-weed, lawn-keep, weedone, plantgard,
miracle, demise.

140
It was thought the solvent would evaporate, because a storm
always knows what it is doing. You depend on clouds and you
depend on water. Do you think you are somehow immune?

141

142
does your blood clot too easily
or too obstinately
is your blood spilled too readily
do your tears flow too freely
the saliva that floods your mouth the sweat slowly dampening
the fabric in your armpit or at the small of your back—
all of these waters are about a specifically situated you
becoming tributaries along the river

143

144
In full possession
of our ecological roots
We can begin to survey
our present situation.
Our blood has been drawn
and we are allowed to look
at a printed page
of its ingredients.

145
Each week the blood flows with more or less of one kind of
cell or substance than the week before. These substances go
up or down, determine treatment’s future measurement,
duration; the land is literally draining away. I must let this
flow through me and pass on. Rain catches the topsoil
washing it from field to creek to river to ocean.

146

147
Where is my body? When is my body? What are the
membranes that separate or differentiate my body from
others? Where and how do those membranes break down?
Where and when does my body cease to be?

148

149
Water is a relation rather than a thing. Biological water is also
the most restless.

150

151
In what ways does my body repeat
like those rarest of rivers
repetition flows both ways
in communion with substances streaming in
from the ecological world—
the exposure experience.

152

153
The exhausted are plastic and adaptable, a mutable river. It is
easier to demand happiness than to clean up the environment.
Imaginaries and figurations are as vulnerable to redirection as
the flows of the river themselves. A river redirected and
drained such that it cannot fulfill its responsibilities to provide
for its human kin is forced to turn away. The exhausted bend
better and more to what is necessary for their having been
worn down.

154

155
These varied speeds and slownesses, multiple movements,
and diverse incorporations of rivers and cancers belie the
difficulty of speaking of them in the abstract—as though they
were one undifferentiated and amorphous thing the same
everywhere and all the time; both finite and inexhaustible;
both the same and always becoming different.

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157
The exhausted live as fluidly as the water. Our planet neither
gains nor relinquishes the water it harbors but only witnesses
its continual reorganization, redistribution and relocation.
Rivers and cancers are seen as dead or alive depending on
causes and conditions.

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159
To call myself a survivor still feels like a betrayal of the dead.
The wells, streams, and fountains simultaneously polluted, the
great orbs of the unsaid continue to float through the air river
at dawn tasting the green silence. But it is time for a new
problem. I feel like another woman de-chrysalized and
become a broader, stretched-out me: she has glimpsed the
other bank and knows that the light plays tricks on you.

160
Especially over water and it's hard to tell just how far away
the other bank is and whether the undertow is carrying you
there or back or whether the earth you thought was solid is in
fact moving. Just as rivers in the desert create an abrupt shift
from lush to sparse, mesic to xeric. Along the banks and in the
drylands, riparian and dry-adapted. I could die of difference or
live myriad selves. Anyone who has been half dead can attest
to this. Just as those who drink water know whether it is hot
or cold.

161

162
Here we are, here I am
alone, and myself
half of me fallen off
half of us gone
and all of us, as ghosts

163

164
Or the undying ones, half of us dead and half of myself,
nowhere to be remembered. Or to be found floating upon a
sea, within a ring of women, like warm bubbles keeping me
afloat upon the surface of a sea. I can feel the texture of
inviting water just beneath their eyes, and don’t fear it.

165
Human beings see water as water. A biochemical descriptor, a
way of naming. The steady relentless march of the nonself,
under the skin of the self. The alien under the familiar, the
visible. The sweet smell of their breath and laughter and
voices, calling my name that gives me volition, helps me
remember.

166

167
I want to turn away from looking down. To remember the
liquid ground and taste the saliva in your mouth. Notice her
familiar presence during your silence. How she is forgotten
when you speak, or again how you stop speaking when you
drink. And how necessary all of that is for you! You also
know that the weed killer is feasting on you. these fluids
softly mark the time and there is no need to knock. Just listen
to hear the music with very small ears.

168

169
Obsessed with pain in ghost flesh I imagine a body-tourism or
soma-exchange support system in which a person could
temporarily inhabit the sensorium of a person in pain.
Through fate and transport. People with cancer traveling to
various bodies of water known to be inhabited by animals
with cancer. An assembly on the banks and shores of these
waters, as a collective consideration of our intertwined lives.

170

171
Make peace alongside our resistance, with the reshaped and
damaged bodies themselves. Cultivate love and respect,
response and responsibility. Other people can see me, and I
can see them. Nothing blocks my vision except for my tears.

172

173
Tears are only water pain is a fluorescent feeling. Chemo
stains burning pee body burden toxic trespass. Everything
going into your mouth even the water that you must drink
because you are desperately thirsty and because if you don't
the drugs will sit in your bladder and corrode it from the
inside out. Everything feels like a bad idea the kind that
cannot repair itself.

174

175
When in pain
any experience of location
exists only as desperation
for its end, for surrender to
namelessness, formlessness
voicelessness and silence
whispered sympathy
environmental fate
unwanted aloneness
and loss of control.

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177
Flow fluctuations. Chemo in semen. Flush twice. Fuck it.
Blood is not the only thing that circulates. Shallow aquifers,
interbedded lenses of sand and gravel, mothers of rivers. The
involuntary use of one’s body as a receptacle for someone
else’s chemicals.

178

179
These images flow quickly. Pain creates excessive
appearance. Biomagnification. Trace your weave back strand
by bloody self-referenced strand. Begin to alter the whole
pattern. Tears well and fill and overflow and they pass.

180

181
Spill report: trace mixtures, transient accidents, a toxic pulse.
Waves slosh silt and poison, the bottom edge of a falling
curtain. Mortality is a gorgeous framework. Cancer is a rare
and still scandalous subject for poetry. I unlearn that tongue in
which my curse is written, the way a river carries its current:
inscribed or incorporated, written across the surface, or
assuming the watery shape of a body.

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183
A river is both water and flowing; do not confuse the water
with the flowing. Fish are not in rivers; rivers do not enclose
the fish. Fish and rivers world each other, living-in-themoment, a small resistance to the march of time: to live in
prognosis.

184
I am alive;
no,
you are dead.

185

186
What is a watershed? Cup your hands together to form a
bowl. Now imagine that the seam between your palms
represents the lowest elevations. Water that falls in your hands
will make its way towards low elevations, forming a stream or
river, but water that falls outside your hands will not. The
boundaries formed by your hands represent the watershed for
your stream.

187
Time is not separate from you, and as you are present, time
does not go away; this would be the same as insisting that
water does not flow (the ultimate insult to natural order).
Stagnant, deadly water which doesn't flow, doesn't
metabolize: a giving up of hope. Bodies of water puddle and
pool. They seek confluence. Even in stagnancy they seep and
leak. They flow into one another in life-giving ways, but also
in unwelcome, or unstoppable, incursions.

188

189
Cancer is what is most ferociously energetic. I was given only
the noisy half of probability that cancer’s cause is located
inside of myself and never the quiet part of probability that its
source pervades our shared world.

190
My skin feels thin. Air touches it on one side, water on the
other. Reclamation lagoons overflow like pouring water into
the ocean and spreading it endlessly. Invisible chemical fumes
are unspeakably substantial, heavier than air. They are not
apparent, but they do not disappear.

191

192
She concludes that they must be dwelling inside her, in the
flows and interchanges between them, like gradients created
by rivers in deserts: triumphant mutations; tangible floods of
energy, rolling off these women toward me. If I resist or try to
stop it, it will detonate inside me, shatter me, splatter my
pieces against every wall and person that I touch.

193

194
You want nothing to penetrate the envelope of your skin. You
resist anything that would connect between the surface of
your body and the currents flowing inside—not as an everbranching tree, but as a braided river, with the capacity to
diverge and converge, as events, mutations, genetic and
epigenetic alterations; the interconnections between
tributaries of the river.

195
Imagine holding a translucent jellyfish under each of your
armpits: as you breathe in, their membranes close inwards to
form a tightening circle; as you breathe out they dilate wide
open, ever more expansive than before.

196

197
These moments and locations of illness are as natural as our
fragile, resilient human bodies interacting with the world, all
the veins in our bodies extended to rivers, intertwined,
mangled. Allow rain to do what it did before buildings, roads,
driveways, parking lots, and other impervious surfaces
covered the landscape: soak into the earth, fill the soil,
recharge groundwater, release flow gradually to rivers and
streams.

198

199
The concept of disease is never innocent, it is invariably an
encouragement to simplify what is complex. Where is your
source? Where have you drawn what flows out of you? For
me, ebb and flow have always set the rhythm of time. One
moment is worth absolutely no more than the other. Multiple
in the unwinding of its becoming, robbed of all capacities of
self-transcendence, humiliated by fear and agony, I hate
pollution and I love my body.

200

201
While the individual body might seek to bracket, subdue, or
tame these channels and flows, this communal body can not
live without them. A fluid, responsive process, restoration
requires digging into the past, stretching toward the future,
working hard in the present. The movement of rivers and
cancers hold the was, is, and yet-to-come together; the flow
and flush; immense slothfulness, like frostbite; sedimentation;
the saliva in my mouth that enables me to speak.

202
Inside this work, these stories, the concepts of unnatural and
abnormal stop being useful. The unturbid current that must be
other people’s consciousness challenges my notion of even
what is human, and yet our absolutely alien mental flows
(which I converted into power to heal myself) freeze, harden,
and evaporate, in warmth and shock and love and concern,
lateral becomings, and other people's fears of their own death.

203

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Fig. 49. Guerrilla Girls (1990) New Year’s Resolution for Public Art Fund’s ‘Messages to the Public’ at
One Times Square, in Spectacolor. Image description: A black and white photograph of Times Square. A
digital sign mounted on the side of a building reads, in a friendly font: “I will look at / things / I don’t
want / to see.” Another digital sign, below, wraps around the building, with text that appears as if scrolling by, reading “LAW….UNOFFICIAL COUNT.” Passersby, cars, and storefronts below set the scene as
early 1990s New York.
FROM INFORMED CONSENT TO SHARED DECISION MAKING

205
[...]
A set of underlying assumptions about autonomy and dependence run unchecked through the
interweaving of artificial intelligence, medicine, and disability. From legal frameworks to sociotechnical narratives to personal interactions, autonomy is the root logic and the goal. Chilean
biologist Humberto Maturana said it very directly: “The fundamental feature that characterizes
living systems is autonomy.”1
However, autonomy is formed in relation to dependencies: closed systems within which to operate, materials and structured interactions, linguistic codes. A nuanced understanding of autonomy requires examining the nature of these dependencies, as well as the categories and limits that
produce multiple inequitable versions of autonomy, leaving us “opaque to ourselves,” as Sylvia
Wynter puts it.2
As a pointed example, those giving and receiving care may not share a holistic understanding of
autonomy. Health workers, patients, families, disabled people, advocates, laws, policies, and standards may each adopt their own partial or provisional definitions of autonomy. These definitions
address physical or mental impairment, social or political participation. They may be framed
in terms of actions (from mobility to self-care), the skills necessary to perform these actions, or
in terms of having coherent goals, and the capacity to make decisions as to how best to achieve
them.
Does autonomy seek freedom from dependence, or does dependence make autonomy possible?
How does autonomy lead to participation in processes of mutual aid, or interdependence?
Autonomy, as a kin word to authority and authorship, distinguishes the autonomous individu1. Humberto R. Maturana, “The Organization of the Living: A Theory of the Living Organization,”
International Journal of Man-Machine Studies 7, no. 3 (May 1975): 313, https://doi.org/10.1016/S0020-
7373(75)80015-0.
2. Sylvia Wynter, “Human Being as Noun? Or Being Human as Praxis? Towards the Autopoetic Turn/
Overturn: A Manifesto,” Unpublished essay, 47.

206
al as author, owner of intellectual property.3
As an exercise of the right to self-determination,
autonomy connotes the right to describe the narrative of one’s own life. Made evident by the
framing of activist and writer Alice Wong’s Disability Visibility Project: “disabled narratives
matter and that they belong to us,” as well as the parliamentarian slogan nihil de nobis, sine
nobis—popularized in English by the disability rights movement in the 1990s as “nothing about
us without us.”4
Autonomy is increasingly understood—and legislated—in terms of being in possession of one’s
own data, profile, and patterns. As interconnected as our data, and our material relationships to
shared environments may become, we are still subject to legal and ethical frameworks premised
on bodily sovereignty, where “interdependence is viewed as something preliminary and occasional, but not as an indispensable feature of the human condition”5
This chapter provides a critical examination of autonomy and dependence as they are applied in
mechanisms of informed consent, shared decision making, explanation and information-seeking.
Finally, this chapter will consider emergent themes that trouble assumptions about autonomy
and dependence, made evident in clinical understanding of intersubjectivity and interdependence, the use and limits of automation in healthcare, and how consent might be approached as
a design challenge for human-computer interaction.
From informed consent…
Consent means informed consent. Information and consent are always already bound together.6
Even in cases of what is referred to in medical literature as “simple consent,” decisions are made
by patients on the basis of tacit knowledge or personal needs, both of which are ever-present
3. Mara Mills and Rebecca Sanchez, eds., Crip Authorship: Disability as Method (New York University
Press, 2023), 5.
4. “About,” Disability Visibility Project, June 3, 2014, https://disabilityvisibilityproject.com/about/.
5. Solveig Magnus Reindal, “Independence, Dependence, Interdependence: Some Reflections on
the Subject and Personal Autonomy,” Disability & Society 14, no. 3 (June 1999): 354, https://doi.
org/10.1080/09687599926190.
6. The addition of “informed” to the legal requirement for consent in medical practice was added, in the
US, in the 1957 court case Salgo v Leland Stanford Jr University Board of Trustees.

207
sources of valuable information.7
What does informed consent depend on? A 2015 workshop hosted by the Institute of Medicine
sought to clarify the inter-related notions of informed consent and health literacy. One finding of
the workshop was that “Informed consent is really part of a larger patient education/patient decision-making framework.”8
This framework, the workshop report goes on to explain, is one part
cultural, and one part technological. Efforts to improve the experience and efficacy of informed
consent may require evolutionary changes for both.
For consent to be informed there needs to be mutual comprehension of what is being consented
to. This comprehension, in turn, depends on a shared literacy, a common language, however situated and provisional.
Addressing what is now a widely perceived failure of standard informed consent processes to
meet the requirement for comprehension, the Institute of Medicine convening called for a cultural shift, bringing health literacy into focus, “moving from persuasion to pedagogy.”9
What is
learning, in consent?
In their 1986 treatise on biologically-informed AI, Understanding Computers and Cognition,
computer scientists Terry Winograd and Fernando Flores proposed a computational system
called “The Coordinator.” This system implements a perspective on communication and organization based on the capacity for language to carry over into action, given the right organizational and connective structure.
What they proposed was a variant of speech act theory put forward by philosopher J.L. Austin
7. Simon N. Whitney, Amy L. McGuire, and Laurence B. McCullough, “A Typology of Shared Decision
Making, Informed Consent, and Simple Consent,” Annals of Internal Medicine 140, no. 1 (January 6,
2004): 54, https://doi.org/10.7326/0003-4819-140-1-200401060-00012.
8. Institute of Medicine Board on Population Health and Public Health Practice, Informed Consent and
Health Literacy: Workshop Summary (National Academies Press, 2015), 92, https://nap.nationalacademies.org/read/19019/chapter/1.
9. Institute of Medicine Board on Population Health and Public Health Practice, Informed Consent and
Health Literacy: Workshop Summary, 86.

208
in the 1950s, which has since traveled far and wide.10 Speech act theory describes in detail the
cases where language not only expresses a thought, but also produces some change in the world.
Saying it makes it so.
For Winograd and Flores, speech acts not only produce changes in the world, they produce the
world itself, as a self-replicating system: “In using language, we are not transmitting information
or describing an external universe, but are creating a cooperative domain of interactions.”11
This image of a “cooperative domain of interactions” draws from earlier work by biologists
Humberto Maturana and Francisco Varela, where the organized world that makes sustained life
possible is framed as a “consensual domain,” to use Maturana’s term.12 Consent, in Maturana’s
very cybernetic usage, is about self-replicating systems, or what he named “autopoietic” systems:
for the organization of life to be consistent, commitments need to be made, and remade.
Informed consent depends on continual commitments, through language and action, to the
preservation of self-replicating systems. In making these commitments, we are incorporated as
members of the system, in “autopoetically instituted, subjectively experienced and performatively enacted genres of being hybridly, human,” to use Sylvia Wynter’s characteristic formulation.13
Lucy Suchman, in her response to Winograd and Flores’ language/action perspective, neatly
connects the biologically-informed notion of autopoiesis to the machinery of The Coordinator,
in its theory and its application, as “a tool for the reproduction of an established social order.”14
Language and action create a cooperative domain of interactions where consent becomes possible—and in doing so, create a pipeline for standardization, and the repetition of patterns. I
mention this to shine light on the pre-conditions for consent (not only autonomy, but the struc10. J. L. Austin, How to Do Things with Words: The William James Lectures Delivered at Harvard University in 1955, 2. ed., [repr.] (Harvard Univ. Press, 2009).
11. Terry Winograd and Fernando Flores, Understanding Computers and Cognition: A New Foundation
for Design (Boston: Addison-Wesley, 1986), 50.
12. Maturana, “The Organization of the Living,” 316.
13. Wynter, “Human Being as Noun?” 9.
14. Lucy Suchman, “Do Categories Have Politics? The Language/Action Perspective Reconsidered,” in
Proceedings of the Third European Conference on Computer-Supported Cooperative Work (European Con- ference on Computer-Supported Cooperative Work, Milan, Italy, 1993), 10.

209
ture of environments and the tools), and to make explicit the fact that patient-generated health
data must conform to medical codes, schemas, and categories, indifferent to an emphasis on
patient-centeredness, and the reach to include the spectral unruliness of patient experience. Categories have politics.
As Suchman puts it: “The adoption of speech act theory as a foundation for system design, with
its emphasis on the encoding of speakers’ intentions into explicit categories, carries with it an
agenda of discipline and control.”15
This is not the embrace, of what Suchman refers to as “the specificity, heterogeneity and practicality of organizational life,” that we were hoping for.16 People make their own worlds. Their
perspective, like “that of bees with respect to their beehive,” may be constrained to the inside or
outside of their worlds.17 Their worlds may be speculative and incomplete, but they are essentially understandable and actionable. They make sense to others as worlds. They work (they are
useful) for the people who make them. They are specific, ongoing, and reversible.
[...]
“We literally create the world in which we live by living it.”18
“That which we have made, we can unmake, then, consciously now, remake.”19
“What is needed is a field that exposes and critiques systems that concentrate power, while
co-creating new systems with impacted communities: AI by and for the people,” writes Pratyusha Kalluri in the journal Nature, under the heading “Don’t ask if AI is good or fair, ask how it
shifts power.”20
15. Suchman, “Do Categories Have Politics?” 2.
16. Suchman, “Do Categories Have Politics?” 2.
17. Wynter, “Human Being as Noun?” 72.
18. Humberto R Maturana, “Biology of Language: The Epistemology of Reality,” in Psychology and Biology of Language and Thought., ed. G.A. Miller and E. Lenneberg (New York: Academic Press, 1978), 18.
19. Wynter, “Human Being as Noun?” 75.
20. Pratyusha Kalluri, “Don’t Ask If Artificial Intelligence Is Good or Fair, Ask How It Shifts Power,”
Nature 583, no. 7815 (July 9, 2020): 169, https://doi.org/10.1038/d41586-020-02003-2.

210
[...]
Consent is the negotiation of agency. It is as central a factor of intimate settings as it is in
discourse on the use of technology, such as privacy, data use, use of intellectual property. Consent inserts potential symmetry into asymmetrical relationships: it concerns both what we allow
others to do to us, and what others allow us to do to them.
The articulation of consent as a legal framework has been a reactive and reflexive process:
tragic and unspeakable errors of judgment, discrimination, and systematic dehumanization have
prompted each evolutionary step.
In the US, four legal cases between 1905 and 1914 laid the groundwork for defining medical consent as a matter of bodily autonomy.21 In each of these cases, a female patient sought repair in
response to non-consensual overreach by a male healthcare provider.22
“The citizen’s first and greatest right, which underlies all others—the right to the inviolability of
[their] person” wrote the presiding judge in Pratt v. Davis (1905): “this right necessarily forbids
a physician or surgeon [...] to violate without permission the bodily integrity of [their] patient.”23
This sentiment, echoed ten years later in the ruling for Schloendorff v. Society of New York Hospital (1915), clarifies the premise for consent in terms of self-determination and violation: “Every
human being of adult years and sound mind has a right to determine what shall be done with
[their] own body; and a surgeon who performs an operation without [their] patient’s consent
commits an assault.”24
From these rulings, legal scholar Marjorie Shultz argues, autonomy is primarily recognized in
terms of contact between bodies, “as a byproduct of protection for two other interests—bodi21. These cases were: Mohr v Williams (1905), Pratt v Davis (1905), Rolater v Strain (1913), and Schloendorff v Society of New York Hospital (1914).
22. Lydia A. Bazzano, Jaquail Durant, and Paula Rhode Brantley, “A Modern History of Informed Consent and the Role of Key Information,” Ochsner Journal 21, no. 1 (2021): 82, https://doi.org/10.31486/
toj.19.0105.
23. Pratt v. Davis, No. 11,723 (Appellate Court of Illinois February 9, 1905).
24. Schloendorff v. New York Hospital (Court of Appeals of the State of New York April 14, 1914).

211
ly security as protected by rules against unconsented contact, and bodily well-being.”25 Elaine
Scarry builds on this apparent confusion between autonomy and physicality: “the body is here
conceived of not simply as something to be brought in under the protection of civil rights, but as
itself the primary ground of all subsequent rights.”26
[...]
That informed consent is a fundamental requirement for research with human subjects is firmly
established. Again, this process was for a long time reactive—a collective and political response
to horror—it is only now entering a phase where ongoing maintenance and revision of policy are
prioritized, as a means of addressing emergent needs for cultural and technological change.
The 1949 Nuremberg Code provides a foundation for informed consent in international law,
outlining the basic requirements for science involving human subjects. The code provides that
research participants should be given “sufficient knowledge and comprehension of the elements
of the subject matter involved,” with which they are enabled to “make an understanding and
enlightened decision.”27 In the US, the National Research Act of 1974 established the National
Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, a
group of doctors, lawyers, and scientists, with the goal of identifying basic ethical principles and
guidelines for research with human subjects. This commission’s work resulted in the release of
the Belmont Report in 1979, with its three main ethical principles: “Respect for Persons,” “Beneficence,” and “Justice.”28
The first principle of “Respect for Persons” defines an autonomous person as “an individual capa-
ble of deliberation about personal goals and of acting under the direction of such deliberation.”
25. Marjorie Maguire Shultz, “From Informed Consent to Patient Choice: A New Protected Interest,” Yale
Law Journal 95, no. 2 (1986 1985): 219, https://heinonline.org/HOL/P?h=hein.journals/ylr95&i=238.
26. Elaine Scarry, “Consent and the Body: Injury, Departure, and Desire,” New Literary History 21, no. 4
(1990): 869, https://doi.org/10.2307/469190.
27. Trials of War Criminals Before the Nuremberg Military Tribunals Under Control Council Law No. 10,
Vol. 2 United States Government Printing Office (1949), 181.
28. Department of Health, Education, and Welfare and National Commission for the Protection of Human
Subjects of Biomedical and Behavioral Research, “The Belmont Report. Ethical Principles and Guidelines
for the Protection of Human Subjects of Research,” 1979, 4.

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A capacity for making decisions, based on goals, leading to action. Taken together, these processes constitute the right to self-determination. The ethical principle of “Respect for Persons,”
as the Belmont Report outlines it, holds a basic view of individuals as autonomous agents, while
providing that some individuals are identifiable as having diminished autonomy, and are entitled
to protection. This latter category addresses those without “the capacity for self-determination,”
and lists illness, disability, and incarceration as factors that may contribute to diminished autonomy.29
Codified in 1991 as the “Common Rule,” a set of federal regulations (45 CFR 46) designed to
protect human subjects taking part in research, the ethical framework of the Belmont Report
was also formative for bioethics research in the US. These regulations are now continuously updated, while leaving the core ethics of the original report intact.
[...]
The practice of consent is culturally-informed and behavioral. It is an activity of daily life that
is learned and practiced. As intimacy coordinator and consent educator Mia Schachter writes:
“Consent is a practice of deep listening, not just for words, but also for body language, gaze,
speech patterns and other non-verbal clues. Consent is an ongoing, practical approach to communication. It is a language and can be embodied. Embodiment = fluency.”30
Planned Parenthood promotes a widely-accepted definition of sexual consent, a practical and
juridical category of interpersonal relationships, using the “F.R.I.E.S.” acronym, as: Freely given,
reversible, informed, enthusiastic, and specific.31
Critiques of this model tend to focus on the flattening of desire, in all its complexity, to enthusi29. Department of Health, Education, and Welfare and National Commission for the Protection of Human
Subjects of Biomedical and Behavioral Research, “The Belmont Report,” 4.
30. Mia Schachter and Kindra Woo, “Consent with Touch: Manual for Practitioners,” CONSENT WIZARDRY, accessed July 20, 2024, https://consentwizardry.com/course-registration/printable-consent-withtouch-pamphlet-bp4r5.
31. “What Is Sexual Consent? | Facts About Rape & Sexual Assault,” accessed August 1, 2024, https://
www.plannedparenthood.org/learn/relationships/sexual-consent.

213
asm. An alternative term that has been proposed is ‘engaged.’32 This modification acknowledges
the necessity of continued analysis of desire, by assessing whether it serves one’s own curiosity,
or it serves a sense of duty to others, and how comfort, certainty, and changing circumstances
can shift one’s positive or negative sense of ‘maybe’ over time.
Schachter, building on Betty Martin’s Wheel of Consent, formalizes the shifting gradients of
self-appraisal as the Yes-to-No Spectrum.
33 In this pedagogical frame, Schachter poses important
qualifiers for engaged consent: is this a learning opportunity? Am I deferring to someone else’s
judgment? Does my sense of potential consequences motivate my decision?
[...]
Consent, as a reversible commitment, happens in shared time. It is an ongoing and changeable
action. A consensual agreement requires ongoing attention, and attending to.
Correspondingly, attention requires our consent. As the world confronts us, through sensory and
logical channels, with decisions about what to pay attention to, we open or close ourselves to
witnessing, participating, or reciprocating.
Writing in Consent with Touch: Manual for Practitioners, Schachter outlines how to maintain
a focus on consent through changing circumstances, and the importance of “narrating what you
are doing, why, what it might feel like, and what you are looking for,” crucial advice for all clinical encounters, out of respect for bodily autonomy and attentive awareness alike.34
The idea that a misplaced emphasis on autonomy leads to a neglect of necessary aspects of
communication in the consent process has been widely discussed. Bioethicists Neil Manson and
Onora O’Neill, in surveying the current limitations of informed consent, locate the ways in which
32. Mia Schachter, “Should Enthusiasm Be A Requirement For Sex?,” Killing Kittens | Blog (blog), August
13, 2021, https://www.killingkittens.com/blog/should-enthusiasm-be-a-requirement-for-sex/.
33. Betty Martin, “Wheel of Consent,” Betty Martin: Developer of the Wheel of Consent, August 2016,
https://bettymartin.org/wp-content/uploads/2016/08/final-Wheel-A4.pdf; Mia Schachter, “Yes-to-No
Spectrum Mini Workbook,” August 2020, https://consentwizardry.com/consent-boundary-classes-workshops-merchandise/digital-consent-amp-boundaries-workbook-s5hwr. 34. Schachter and Woo, “Consent with Touch: Manual for Practitioners.”

214
the notion of information itself is distorted in theory and practice. In principle, information is
a process to which all parties contribute, rather than a material passed between separate and
autonomous participants. Like consent, information is a specific, personalized, context-dependent, norm-dependent, intersubjective, rational process. These aspects of information-as-process
are occluded by the unshakeable metaphor of information-as-material, as “the ‘content’ of communication, or as something that is acquired, stored, conveyed, transmitted, received, accessed,
concealed, withheld.”35 One person has the information, the other person needs the information,
necessitating as close to a lossless transfer across an asymmetrical power gradient as possible.
The culture and the technology must shift. One recent change is to shift the standard for what
information is relevant: “The reasonable-patient standard views the informed consent communication process from the patient’s perspective. It requires physicians and other health care practitioners to disclose all relevant information about the risks, benefits, and alternatives of a proposed treatment that an objective patient would find material in making an intelligent decision
as to whether to agree to the proposed procedure.”36
Traditionally, courts have “tacitly reinforced paternalism by calling on physicians as expert
witnesses in informed-consent lawsuits,” resulting in a self-replicating system where “physicians
decided how much information a physician should disclose to patients.”37
In 2015, the UK Supreme Court found, in Montgomery v Lanarkshire Health Board, that the
standard for what information should be provided to patients to constitute informed consent
“will no longer be determined by what a responsible body of physicians deems important but
rather by what a reasonable patient deems important.”38
35. Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics (Cambridge: Cambridge
University press, 2007), 35.
36. Erica S. Spatz, Harlan M. Krumholz, and Benjamin W. Moulton, “The New Era of Informed Consent:
Getting to a Reasonable-Patient Standard Through Shared Decision Making,” JAMA 315, no. 19 (May 17,
2016): 2063, https://doi.org/10.1001/jama.2016.3070.
37. Dominick L Frosch and Robert M Kaplan, “Shared Decision Making in Clinical Medicine: Past Research and Future Directions,” American Journal of Preventive Medicine 17, no. 4 (November 1999): 286,
https://doi.org/10.1016/S0749-3797(99)00097-5. 38. Spatz, Krumholz, and Moulton, “The New Era of Informed Consent,” 2063.

215
Information needs, even when determined by what is imagined as a reasonable patient (a term
I’d like to call into question), are not always considered in the context of other needs. The
threshold for informed consent should address both how information is offered and how it is
received, including such person-centered factors as the burden of complex and consequential
decision-making on distressed patients, who are often not given adequate resources (time, materials, support) to make good decisions. Information is too-often presented with the requirement
to sign “minutes before the start of a procedure, a time when patients are most vulnerable and
least likely to ask questions hardly consistent with what a reasonable patient would deem acceptable.”39 To give oneself up to a medical procedure is to make a departure, to leave one world
and enter another, and carries all the necessity of preparing for such a transition.
[...]
Departure, for Édouard Glissant, is “the moment when one consents not to be a single being and
attempts to be many beings at the same time.”40 In this “passage from unity to multiplicity” that
Glissant identifies as characteristic of diaspora, could automated pattern-matching tools such as
AI act as a go-between or guide?
The capacity of large language models (LLMs) to summarize and revise content is already being
put to use in hospital systems as a guide, making the language of informed consent more accessible. This capacity for summarization and explanation contributes to a broad need for language
accessibility, both in terms of translation and in terms of simplification. Near-future use may
include the generation of images, diagrams, and videos for use as decision aids.41
Proxies, or “those who are most likely to understand the [...] subject’s situation and to act in
that person’s best interest,” are an important factor in decisions made by and for people without capacity for self-determination, where mental faculty is either diminished, developing, or in
39. Spatz, Krumholz, and Moulton, “The New Era of Informed Consent,” 2063.
40. Manthia Diawara and Édouard Glissant, “One World in Relation: Edouard Glissant in Conversation with Manthia Diawara,” Nka Journal of Contemporary African Art 2011, no. 28 (March 1, 2011): 5,
https://doi.org/10.1215/10757163-1266639.
41. Fatima N. Mirza et al., “Using ChatGPT to Facilitate Truly Informed Medical Consent,” NEJM AI 1,
no. 2 (January 25, 2024): 1, https://doi.org/10.1056/AIcs2300145.

216
decline.42 Proxies carry the legal authority to represent, to speak for or act on behalf of.
Where should AI be situated in supporting informed consent? As go-between and guide, between
patient and information, or between patient-as-individual and patient-as-data? Or as a proxy:
for patient, caregiver, or health care professional?
[...]
…to shared decision making
Informed consent is a legal concept that requires information to be provided before consent can
be made. Articulations of the concept emphasize the importance of autonomy and self-determination. However, problems with poorly implemented consent frameworks lead to a slippage
between consent and compliance, and a failure to support patient self-determination.
Informed consent mechanisms, often lacking specificity, “tend to be generic, containing information intended to protect the physician or hospital from litigation.”43 Compliance-centered
methods that privilege the transfer of information as material, rather than aiding in the process
of comprehension, have been described as the “banking” model of education in Paulo Freire’s
Pedagogy of the Oppressed, or as a “container” for the passing of information in the bioethics
framework provided by Manson and O’Neill.44 These models are critiqued for their contribution
to flawed, inefficient, and misleading exchanges of information. By extension, exchanges premised
on these models do not foster safe disclosure and participation, but reinforce cultures of dominance, undermine patient-centered outcomes, and short-circuit processes of inquiry.
Shared decision making, on the other hand, is an ethical move that recognizes “the need to support autonomy by building good relationships, respecting both individual competence and inter42. Department of Health, Education, and Welfare and National Commission for the Protection of Human
Subjects of Biomedical and Behavioral Research, “The Belmont Report,” 7.
43. Spatz, Krumholz, and Moulton, “The New Era of Informed Consent,” 2063.
44. Paulo Freire, Pedagogy of the Oppressed (New York: Bloomsbury Academic, 2018), 72; Manson and
O’Neill, Rethinking Informed Consent in Bioethics, 35.

217
dependence on others.” As a result, it has been shown to lead to measurable knowledge gains by
patients, increased confidence in decisions, and more active patient involvement.45
The choice to enter into a shared decision making process is situational: higher risk decisions
require a focus on information; lower certainty outcomes require a focus on the decision making
process.46 Nevertheless, the emergence of shared decision making seeks to support full autonomy
by balancing the right to self-determination with the ethical principle of relational autonomy,
which holds that “our decisions will always relate to interpersonal relationships and mutual
dependencies.”47 As an application of relational autonomy, shared decision making sheds light on
the numerous relationships that contribute to clinical decision making, including what patient
and provider bring as individuals, together with the array of technical, social, and economic factors that define clinical practice.
“As best practice” shared decision making “validates, augments, and enriches the process of
informed consent by emphasizing patients’ understanding and prioritizing of different medical
interventions in light of their own values and lived experiences.”48 Shared decision making, as it
has been defined by numerous sources, is “a process by which patients and providers consider
outcome probabilities and patient preferences and reach a health care decision based on mutual
agreement.”49 Shared decision making builds on and with informed consent. It is a collaborative process between healthcare providers and patients. It requires a supportive and responsive
environment on the part of the clinician, and free and open disclosure of values, preferences and
expectations on the part of the patient.
[...]
45. Glyn Elwyn et al., “Shared Decision Making: A Model for Clinical Practice,” Journal of General Internal Medicine 27, no. 10 (October 2012): 1362, https://doi.org/10.1007/s11606-012-2077-6.
46. Whitney, McGuire, and McCullough, “A Typology of Shared Decision Making, Informed Consent, and
Simple Consent,” 54.
47. Elwyn et al., “Shared Decision Making,” 1361.
48. James Childress and Martha Day Childress, “What Does the Evolution From Informed Consent to
Shared Decision Making Teach Us About Authority in Health Care?,” AMA Journal of Ethics 22, no. 5
(May 1, 2020): 427, https://doi.org/10.1001/amajethics.2020.423. 49. Frosch and Kaplan, “Shared Decision Making in Clinical Medicine,” 285.

218
The introduction of AI technologies into medical data practices further erodes the stability of
autonomy-based interpretations of informed consent, both positively and negatively.
Researchers and patient advocates alike have positively evaluated the use of generative AI to
augment informed consent and decision support—particularly for its summarization and explanation functionality.50 However, induced belief revision, as a tendency to defer to automated or
AI-assisted analysis over intuition, tacit knowledge, and traditional clinical measures, is a cautionary factor contributing to the need for trust, accountability, and agency to be shared between patients and providers.51
In December 2023, the Department of Health and Human Services adopted the HTI-1 Final
Rule (89 FR 1192).52 The stated goal of this legislation was to implement requirements already
proposed in the 21st Century Cures Act (85 FR 25642) for the interoperability and transparency
of AI-based healthcare technologies.
Reading these two pieces of legislation together, it can seem as if interoperability and transparency are the same thing. Both require the safe disclosure—of data, protocols, methods—and means
of access to sensitive health information, efficiently achieved through the design and maintenance of a new standard application programming interface, or API. An API is a set of rules for
how different computer programs should communicate with one another. The rules of an API
describe a structure for making requests and responses, determining a program’s capacity for
interoperability with other programs. APIs shape what is possible to be done with information
that moves between technical systems. In this sense, the most direct beneficiaries of interoperability and transparency, when applied to health technology, are other pieces of health technology.
[...]
50. Mirza et al., “Using ChatGPT to Facilitate Truly Informed Medical Consent;” Carey Goldberg, “Patient Portal,” NEJM AI 1, no. 1 (December 11, 2023), https://doi.org/10.1056/AIp2300189.
51. Jethro C. C. Kwong et al., “When the Model Trains You: Induced Belief Revision and Its Implications
on Artificial Intelligence Research and Patient Care — A Case Study on Predicting Obstructive Hydronephrosis in Children,” NEJM AI 1, no. 2 (January 25, 2024): 1, https://doi.org/10.1056/AIcs2300004.
52. The full name for the HTI-1 Final Rule is “Health Data, Technology, and Interoperability: Certification
Program Updates, Algorithm Transparency, and Information Sharing,” and the legal code is 89 FR 1192.

219
The HTI-1 Final Rule sets guidelines for, among other things, the use of predictive decision support interventions (DSIs). Predictive DSIs, as defined by the legislation, are tools “that support
decision-making by learning or deriving relationships to produce an output, rather than those
that rely on pre-defined rules.” This includes both “technologies that require users’ interpretation and action to implement as well as those that initiate patient management without user
action”—that is, tools that provide insight or information to be acted on by humans; interactive,
hands-on tools to be acted on together with AI; and automated processes that do not have a
human in the loop.
This broad, undifferentiated definition contrasts with how AI in medicine is characterized elsewhere.The American Medical Association Current Procedural Terminology’s AI Taxonomy
makes a clear high-level distinction between assistive, augmentative, and fully automated technologies.53 The government rule addresses this call for specificity, and finds that “such constraints
may unintentionally exclude relevant technology as it evolves and is applied to more use cases,
humans interact with technology in more diverse ways, and societal views on the line between
assistive and autonomous technologies shift.”
What are these decision aids that are expected to evolve, be applied to more use cases, that
humans will interact with in more diverse ways?
Patient reported outcome measures (PROMs) are a key source for analysis that contributes to
decision aids, showing how treatment, health status, and quality of life come together in meaningful ways. As discussed in chapter three (“The Validated Instrument”), it is expected that the
application of AI tools to PROM data will greatly facilitate their use as ground truth for decision making processes.
Decision aids are access tools, in that they “provide balanced, evidence-based information about
treatment options and usually are easy to read, often with pictures and figures; some may in53. “CPT Appendix S: AI Taxonomy for Medical Services & Procedures,” American Medical Association,
July 19, 2024, https://www.ama-assn.org/practice-management/cpt/cpt-appendix-s-ai-taxonomy-medi- cal-services-procedures.

220
clude patient testimonials about different pathways.”54
Patients with access to decision aids were found to have “had greater knowledge of the evidence,
felt more clear about what mattered to them, had more accurate expectations about the risks
and benefits, and participated more in the decision-making process.”55
[...]
Predictive DSIs offer a clear example of what is broadly known as automated decision making
(ADM).
Article 22 of the European Union’s General Data Protection Regulation, commonly known as
GDPR, protects subjects from the effects of automated decision making as follows:
“The data subject shall have the right not to be subject to a decision based solely on
automated processing, including profiling, which produces legal effects concerning him or
her or similarly significantly affects him or her.”56
A data subject, in this context, is explained as “one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location
data, an online identifier or to one or more factors specific to the physical, physiological, genetic,
mental, economic, cultural or social identity of that natural person.”57
What Hito Steyerl refers to as patterns of life.58
Performative technologies, from The Coordinator to generative AI, enact what they describe,
54. Spatz, Krumholz, and Moulton, “The New Era of Informed Consent,” 2063.
55. Spatz, Krumholz, and Moulton, “The New Era of Informed Consent,” 2064.
56. “Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the
Protection of Natural Persons with Regard to the Processing of Personal Data and on the Free Movement
of Such Data, and Repealing Directive 95/46/EC (General Data Protection Regulation),” Pub. L. No. OJ
L 119, 2016/679 EU (2016), §1.4, https://eur-lex.europa.eu/eli/reg/2016/679/oj.
57. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the
protection of natural persons with regard to the processing of personal data and on the free movement of
such data, and repealing Directive 95/46/EC (General Data Protection Regulation), §4.22.
58. Hito Steyerl et al., Pattern Discrimination (Meson Press, 2018), 2.

221
and create data subjects through repetition. The model trains you. The concern is that the
outcome of these processes will impose coherence that is unrecognizable to us, patterns we can’t
sense, and explanations whose logic we can’t reason for or against.
Performance studies scholars Roberto Alonso Trillo and Marek Poliks, in the introduction to
their co-edited collection of texts on performativity after AI, pose a set of framing questions: “Is
artificial intelligence (AI) becoming more and more expressive, or is human thought adopting
more and more structures from computation? What does it mean to perform oneself through AI,
or to construct one’s subjectivity through AI”?59 Even if answers were available, the remainder
is: can we still talk about meaning in the same way?
[...]
Incoherent, unexplainable and uninterpretable outcomes can’t be shared. Nor is their process to
be shared in. These are symptoms of a black box.
Black box is a term that “can refer to a recording device, like the data-monitoring systems in
planes, trains, and cars. Or it can mean a system whose workings are mysterious; we can observe
its inputs and outputs, but we cannot tell how one becomes the other.”60 A black box is something that is not open to interpretation.
Media theorist Mark Andrejevic extends the black box metaphor, with its implicit focus on
opacity, obscurity, and secrecy, to consider “actionable but non-sharable information:” practical
insight, such as material used to support decision making, that is not shareable in the sense that
it cannot be explained or interpreted.61
To put this thought in context, Andrejevic quotes literary theorist Paul Ricouer—I paraphrase
59. Roberto Alonso Trillo and Marek Poliks, Choreomata: Performance and Performativity after AI,
(Chapman and Hall, 2023), i, https://doi.org/10.1201/9781003312338.
60. Frank Pasquale, The Black Box Society: The Secret Algorithms That Control Money and Information
(Cambridge: Harvard University Press, 2015), 3.
61. Mark Andrejevic, “Shareable and Un-Sharable Knowledge,” Big Data & Society 7, no. 1 (January
2020): 1, https://doi.org/10.1177/2053951720933917.

222
here: a text, as an object of interpretation broadly defined, mediates between one reader and another, between readers and the world they occupy, and between readers and their interior selves.
Interpretation is a kind of sharing out of the text’s meaningfulness across all these mediated
relationships. “The black box, by contrast,” writes Andrejevic, “replaces sharing with operationalism: the goal is not to tell or to explain, but to form a link in a process of decision or classification.”62
This narrow focus on inputs and outputs encapsulates what Beatriz Fazi calls the “autonomy of
automation,” or, freedom from human modes of abstraction and representation. This autonomy
is most evident in the capacity of self-supervised AI models (exemplary black boxes) to produce
internal representations “independently from the phenomenological or experiential ground of the
human programmer.”63 When we think about how to use AI to support decision making, it is
important to remember that the basis for this support is fundamentally different from human
thought and experience.
However, this difference is non-separable. We encounter black box systems as hybrids of automation, abstraction, and storytelling, where “the role of narrative is inseparable from the call for
transparency.”64 Narrative makes systems legible, and this is unavoidable, even if this narrative is
about illegibility.
[...]
As with analysis, always return to a situated perspective:
• Who poses the questions?
• Whose well-being is at stake?
• What lived experience is used to frame decisions and reactions?
• Whose imaginary is drawing the field of decisions?
62. Andrejevic, “Shareable and Un-Sharable Knowledge,” 2.
63. M. Beatrice Fazi, “Beyond Human: Deep Learning, Explainability and Representation,” Theory, Culture & Society 38, no. 7–8 (December 1, 2021): 68, https://doi.org/10.1177/0263276420966386. 64. Andrejevic, “Shareable and Un-Sharable Knowledge,” 1.

223
[...]
Compression as Explanation
“The manner and context in which information is conveyed is as important as the information itself [...] It is necessary to adapt the presentation of the information to the subject’s capacities.”65
What is information?
It is different from raw data, and it is separate from the way data can be modeled. Information,
as defined by computer scientist Marcia Bates, consists of all the instances where people interact with their environment in such a way that it leaves some impression on them. Information
is found in the interactions that change one’s knowledge. As Bates describes: “these impressions
can include the emotional changes that result from reading a novel or learning that one’s friend
is ill. These changes can also reflect complex interactions where information combines with preexisting knowledge to make new understandings.”66 This definition of information reflects a view
that is centered on the people who seek out and use it, rather than the systems that organize,
preserve, and make information available.
What do people need from information?
Brenda Dervin defined information needs in terms of sense-making: A person, in their time and
place, needs to make sense. The sense they need to make is for their own world, their time and
place. To do this, they need to inform themselves constantly. Their need for information is oriented by questions that deal with the here and now of the world they see themselves as being in,
the places they come from, and the places they see themselves going to. Information needs are
always situated, they arise in the shape of questions about the conditions of one’s life. As Dervin
articulates: “Information needs are always personalized, as there is no other way for them to be;
65. Department of Health, Education, and Welfare and National Commission for the Protection of Human
Subjects of Biomedical and Behavioral Research, “The Belmont Report,” 7.
66. Marcia J Bates, “Information Behavior,” Encyclopedia of Library and Information Sciences 3 (2010):
2074.

224
information seeking and use can be predicted more powerfully by knowing the kind of situations
[people] are in rather than knowing their personality or demographic attributes; people seek
information when their life situations are such that their old sense has run out; people are in
charge of how they use the information they attend to.”67
How do people behave with information?
Sense-making is one kind of information behavior. As with other kinds of behavior, information
behavior is contextual, it involves some motivating factor, or objective: “People are trying to
solve problems in their lives, not ‘seek information’.”68 Information behavior, as a broadly descriptive term, addresses why we choose to seek out information, what we (believe we) need from
information, what we do with what we find, and what kinds of explanations we find useful.
Information behavior is not always a process of careful assembly and consideration. In the particular case of information seeking under threat, awareness of needs, motivations, and contextual
support may shatter as a person copes with the dissonance of too much information. In seeking
to understand this coping response, information seeking under threat has been shown to produce
either active, passive, or avoidant behaviors, characterized along the dimensional axis of monitoring or blunting, heightened and continuous seeking out of information, or refusal, closing off to
certain forms of information, and seeking distraction.69
What happens when a patient researches their own condition?
Patients’ access to their own health records is a protected right under HIPAA (1996). The HI67. Brenda Dervin, “Information as a User Construct: The Relevance of Perceived Information Needs to
Synthesis and Interpretation,” in Knowledge Structure and Use: Implications for Synthesis and Interpretation, ed. Spencer A. Ward and Linda J. Reed (Temple University Press, 1983), 173.
68. Bates, “Information Behavior,” 2080.
69. Suzanne M Miller, “Monitoring and Blunting: Validation of a Questionnaire to Assess Styles of Information Seeking Under Threat,” Journal of Personality and Social Psychology 52, no. 2 (1987): 345–53;
Suzanne M. Miller, “Monitoring versus Blunting Styles of Coping with Cancer Influence the Information
Patients Want and Need about Their Disease. Implications for Cancer Screening and Management,”
Cancer 76, no. 2 (1995): 167–77, https://doi.org/10.1002/1097-0142(19950715)76:2<167::AID-CNCR2820760203>3.0.CO;2-K; Donald O. Case et al., “Avoiding versus Seeking: The Relationship of Information Seeking to Avoidance, Blunting, Coping, Dissonance, and Related Concepts,” Journal of the
Medical Library Association 93, no. 3 (July 2005): 353–62, https://www.ncbi.nlm.nih.gov/pmc/articles/
PMC1175801/.

225
TECH act (2009) moved this access into electronic health records (EHR), software-based patient
portals and apps. The 21st Century Cures Act (2016) established this right as an obligation for
care providers to not withhold their patients’ data. By 2021, the 21st Century Cures Act Final
Rule further refined the legal requirement of providing “the immediate electronic availability of
test results to patients, likely empowering them to better manage their health. Concerns remain
about unintended effects of releasing abnormal test results to patients.”
How do patients think about having access to their own health information?
In multisite and international studies, patients tend to agree they prefer to have immediate
access to their health information, even when that information is provided without adequate
context or explanation.70 Patients surveyed also tend to agree that improved access to their own
health information improves, in turn, their communication with health care providers.71 It is not
directly evident from these studies that the information provides content for this communication
(that it is the subject matter of the improved communication) or that it directly informs shared
decision making.
In a systematic review of how patients’ respond to having immediate access to their own electronic health records (EHR), benefits were found ranging from reduced anxiety, better doctor–
patient relationship, increased awareness of changing health status, adherence to medication,
and improved patient outcomes. Patients self-reported better engagement in terms of self-management of symptoms, and increased knowledge. Concerns were found to be focused on security,
privacy, and increased anxiety.72
Across the board, increased access to one’s health information has been shown to produce in70. Bryan D. Steitz et al., “Perspectives of Patients About Immediate Access to Test Results Through an
Online Patient Portal,” JAMA Network Open 6, no. 3 (March 20, 2023): e233572, https://doi.org/10.1001/
jamanetworkopen.2023.3572.
71. Jonas Moll and Hanife Rexhepi, “The Effect of Patient Accessible Electronic Health Records on Communication and Involvement in Care - A National Patient Survey in Sweden,” Studies in Health Technology and Informatics 270 (June 16, 2020): 1056, https://doi.org/10.3233/SHTI200323.
72. Archana Tapuria et al., “Impact of Patient Access to Their Electronic Health Record: Systematic Review,” Informatics for Health and Social Care 46, no. 2 (June 2, 2021): 194, https://doi.org/10.1080/17538
157.2021.1879810.

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creased patient engagement, confidence in self-management of symptoms, health literacy, and
informed participation in shared decision making. It is hoped that more transparent electronic
health records will be taken up as a priority of healthcare technology.73
[...]
How does information behavior affect how we disclose, answer, make decisions, and navigate our
own legibility?
Elfreda Chatman, writing in The Impoverished Life-World of Outsiders, traces how flows of information can break down, contributing to a power gradient that she names information poverty.
In this schema, knowledge falls into insider and outsider categories wherever trust is at a minimum, and vulnerability—sense of personal risk—is at a maximum. While Chatman withholds
decision on the question of whether one needs to be an insider to understand the lived experiences of insiders, she traces the effects of this distinction through information behaviors such as secrecy and deception (preferring not to disclose, or providing false disclosure), as well as attitudes
about what qualifies as relevant information (information needs), and what resources are shared
across the insider / outsider boundary.
It is easy for me to read Chatman’s idea of information poverty in terms of the experience of
illness—how patients inform themselves, and how patients relate to their own data. As artist
Carolyn Lazard details in their illness narrative How to Be a Person in the Age of Autoimmunity, the insider information of other patients carries value that the objective knowledge of outsiders lacks: “to listen to the suggestions of people who actually lived with the disease” rather than
receive “advice from those who merely studied it.” Significantly, maybe, this shift in listening
accompanies not only a sense of mistrust and uncertain relevance in regard to medical knowledge, but also a sense of narrative incoherence, in that “these kinds of experiences are difficult to
73. Tapuria et al., “Impact of Patient Access to Their Electronic Health Record;” Steitz et al., “Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal;” Chelsea
Richwine et al., “A Decade of Data Examined: Patient Access to Electronic Health Information,” Health
IT Buzz, December 11, 2023, https://www.healthit.gov/buzz-blog/a-decade-of-data-examined/a-decadeof-data-examined-patient-access-to-electronic-health-information; Moll and Rexhepi, “The Effect of Patient
Accessible Electronic Health Records on Communication and Involvement in Care.”

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narrativize. There is no story arc.”74
While Chatman describes information poverty in terms of how information is sought out, used,
and shared within groups, Aimé Césaire names a wider failure of sociotechnical imagination to
contend with incoherence as “impoverished knowledge.” Césaire proposes that poetry, and poetic
knowledge, fill the gaps: “Scientific truth has as its sign coherence and efficacity. Poetic truth has
as its sign beauty,” he proposes. “What presides over the poem is not the most lucid intelligence,
or the most acute sensibility, but an entire experience.”75
Césaire’s notion of poetic knowledge travels well, as a means of “working on and against” sociotechnical systems, with the act of disidentification, to use José Esteban Muñoz’s formulation. For
both insider and outsider positions, patients and researchers, encounters with new technology
produces multiple instances of disidentification, repurposing, and relationality: “studying information systems in isolation and not as part of broader social constellations misses the nuance of
how people negotiate, resist, and create new ways of interacting with technology.”76
Analyses of “crip legibility”, or the methods with which disabled people interact with, relate to,
and slip between legible categories, as a form of information expertise, are crucial to re-imagining the future of health information systems.77 The call has been issued for “greater acknowledgement of the lived experiences and material design practices of disabled people,” holding that “the
lived experience of disability, and the shared experience of disability community creates specific
expertise and knowledge that informs technoscientific practices.”78
[...]
74. Carolyn Lazard, “How to Be a Person in the Age of Autoimmunity,” Project Row Houses (blog), March
30, 2017, https://projectrowhouses.org/howtobeapersonintheageofautoimmunity/.
75. Aimé Césaire, “Poetry and Knowledge,” Sulfur, no. 5 (1982): 22, http://libproxy.usc.edu/login?url=https://www.proquest.com/scholarly-journals/poetry-knowledge/docview/866208306/se-2?accountid=14749.
76. Gracen Brilmyer and Crystal Lee, “Terms of Use: Crip Legibility in Information Systems,” First Monday, January 16, 2023, 3, https://doi.org/10.5210/fm.v28i1.12935.
77. Brilmyer and Lee, “Terms of Use,” 1.
78. Aimi Hamraie and Kelly Fritsch, “Crip Technoscience Manifesto,” Catalyst: Feminism, Theory, Tech- noscience 5, no. 1 (April 1, 2019): 7, https://doi.org/10.28968/cftt.v5i1.29607.

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“What is lost in the search for perfect explainability?”
Nora N. Khan poses this rhetorical question in the 2022 compendium Mirror Stage: Between
Computability and its Opposite.
79 In the context of AI, explainability, as a summary or high level
overview of the processes and justifications used (e.g. why did you do that), is distinguished in
common use from interpretation (e.g. how did you do that). Something can be explained even if
a low level examination of the process is not accessible.
Explainability is widely held up as a guideline for the development of ethical AI, particularly
when the technology is used with sensitive data, and in decision making processes that have tangible effects on people’s lives. Healthcare is a prime example of this, where a right to justification
is placed alongside non-discrimination as a core aspect of fairness.80
However, explainability, as policy and as a critical tool, has its discontents. Unlike interpretation, which operates reflexively across incommensurable differences, explainability relies on sometimes clumsy metaphors and re-framings to produce a common legibility around reasons. We
bring what we cannot understand into our own world: “we say that a computing machine ‘sees’,
‘listens’ or ‘thinks’, just as we say that an aeroplane ‘flies’ despite our awareness that an aircraft
and a bird take flight in profoundly different ways.”81
These metaphors shape what we are able to imagine about the processes at work, limit the
scope of our understanding to what is already familiar, and obscure other important factors and
conditions. We don’t learn from these explanations alone. As Khan puts it: “There are vital ways
to map and narrate and explain the world outside of the limits of language”.82 AI should be, in
addition to a translator and summarizer, a troubling agent, bringing friction to decisions. providing variations, expanding the terms and modes of a search. A wider scope, never a narrowing.
Have you considered this another way?
79. Nora N. Khan, Mirror Stage: Between Computability and Its Opposite, Holo 3 (Holo, 2022), 6.
80. Benedetta Giovanola and Simona Tiribelli, “Beyond Bias and Discrimination: Redefining the AI Ethics
Principle of Fairness in Healthcare Machine-Learning Algorithms,” AI & Society 38, no. 2 (April 2023):
558, https://doi.org/10.1007/s00146-022-01455-6.
81. Fazi, “Beyond Human,” 68.
82. Khan, Mirror Stage: Between Computability and Its Opposite, 6.

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[...]
For healthcare providers, the failure to recognize, symbolize, and reflect on the consequences
of the emotions they experience in clinical encounters is shown to impede or adversely affect
patient care.83 This is to say, when information seeking is an interpersonal activity, such as in
shared decision making, emotion and affect change how information is used, sought out, and
shared. Recognizing—naming—these changes is an important way of supporting clinical processes.
How can we ask better questions?
In advising clinicians on how to prepare for conversations about palliative care in oncology, Back
et al. offer a quick litany of questions, conversation starters:
(1) What is happening?
(2) How do you (and I) feel?
(3) What is important?
These subtext of these three elements—that we are in a process that is unfolding; that we should
recognize the emotions, shared or differing, that we are experiencing, as information; and that
there is key information, requiring decision or action—are critical to how information works in
the clinic.84
The Common Rule explains the importance of specificity and formulation of key information, to
help make comprehension easier:
83. Diane E. Meier, “The Inner Life of Physicians and Care of the Seriously Ill,” JAMA 286, no. 23 (December 19, 2001): 3007, https://doi.org/10.1001/jama.286.23.3007.
84. Anthony Back, Tara Friedman, and Janet Abrahm, “Palliative Care Skills and New Resources for
Oncology Practices: Meeting the Palliative Care Needs of Patients With Cancer and Their Families,”
American Society of Clinical Oncology Educational Book, no. 40 (May 2020), 1, https://doi.org/10.1200/
EDBK_100022.

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Informed consent must begin with a concise and focused presentation of the key information that is most likely to assist a prospective subject or legally authorized representative
in understanding the reasons why one might or might not want to participate in the research. This part of the informed consent must be organized and presented in a way that
facilitates comprehension.85
In terms of representation, compression is the process of making a simpler or more lightweight
representation from an original version by focusing only on what is considered most meaningful
about the original—the key information. Compression is a fundamental process in any tool that
relies on digital representation, including AI. Conceptually, compression can serve as a metaphor for any simplified communication of complex reality: a thought put into words, a map, a
diagram. A lossy compression is created, in part, by removing information that is not deemed
meaningful, such that the reconstituted copy has lost some aspect of the original. This loss
is accounted for by processes of normalization, deciding what the standard of meaningfulness
should be, and conforming to that. What escapes the norm is held to be uncertain, irrelevant,
and costly, a threat.
Explanation is lossy compression, it normalizes the material being explained, the means of explanation, and the one being explained to. Healthcare providers helping patients make an informed
decision know this: focus only on what is relevant to the choice at hand.
Gayatri Spivak, addressing the symposium “Explanation and Culture” at the University of
Southern California’s Center for the Humanities in 1979, turned her talk on the symposium
itself, in a classic deconstructive turn, pointing to “the prohibition of marginality that is implicit
in the production of any explanation.”86
Explanation, as compression, works to eliminate uncertainty.
Spivak admonished the gathering of scholars: “We take the explanations we produce to be the
85. “Federal Policy for the Protection of Human Subjects (‘Common Rule’),” 45 CFR §46.116(a)(5)(i)
(2016), https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/index.html.
86. Gayatri Chakravorty Spivak, “Explanation and Culture: Marginalia,” in The Spivak Reader: Selected
Works of Gayatri Chakravorty Spivak, ed. Donna Landry and Gerald M. MacLean (New York: Routledge,
1996), 31.

231
grounds of our own action; they are endowed with coherence in terms of our explanation of a
self.”87 This cautionary critique—not to mistake the explanation for ground truth—can be urgently applied to the use of AI, particularly large language models (LLMs), whose appetite for
new data has led to widespread use of synthetic data in the training process, especially as data
sharing practices harden.88
Ground truth is what an explanation points to, in order to show with certainty that the arguments it makes are sound. Ground truth, to be legible within explanatory and predictive systems, is assembled through processes of identifying, labeling, classifying, ordering, and structuring. It can start with any data that we think of as true, to the extent that we want to build our
tools, processes, and systems around it as an example of truth.
Ground truth for shared decision making can originate with clinical observation and testing,
caregiver input, patient-reported outcomes, as well as other forms of patient-generated health
data including passively collected data from wearable sensors, apps, and fitness trackers.89
Where there are discrepancies in health literacy, as with patients confronted with the need to
make sense of technical and legal language that dominate informed consent material, access tools
such as plain language or easy read translations are one starting point.
Where self-reporting or shared decision making present difficulty for patients with disabilities
and / or high cognitive load, there are a range of strategies to be considered, from changing the
question, how or when it is asked, to more radical departures from systematic norms, such as
involving proxies or interpreters, or adding context from passively collected data.
Disabled people experience negative health outcomes disproportionately, but evidence shows
that placing focus on how information is gathered, shared, and used could lead to greater health
87. Spivak, “Explanation and Culture: Marginalia,” 41.
88. Xu Guo and Yiqiang Chen, “Generative AI for Synthetic Data Generation: Methods, Challenges and
the Future” (arXiv, March 6, 2024), http://arxiv.org/abs/2403.04190.
89. Carissa A. Low, “Harnessing Consumer Smartphone and Wearable Sensors for Clinical Cancer Re- search,” Npj Digital Medicine 3, no. 1 (December 2020): 140, https://doi.org/10.1038/s41746-020-00351-x.

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equity. This means: (1) collecting information on the context that affects a person’s experience
of function; (2) representing individual patients’ voices, perspectives, and goals in the electronic
health record; and (3) standardizing how observations of function and context are recorded in
the electronic health record.90
Overall, this strategy orients towards two endpoints: one addresses structure, by changing how
standardized tools such as electronic health records can accommodate a wider range of information and context. The other addresses engagement, and respect for patients’ contribution: to
collect and analyze patient-reported descriptions of their own personal perceptions and goals.
Learn to ask.
[...]
The goal of all of this, and how shared decision making is supported, is to build knowledge
about what is meaningful to patients in terms of the care they receive. How it translates to their
real life. The name for this is minimal clinically important difference (MCID): what is the smallest intervention that could be taken to produce a meaningful positive effect, from the patient’s
perspective?91
[...]
Autonomy-in-Relation:
The promise and concern around AI as a predictive tool in healthcare has been well established,
90. Denis R. Newman-Griffis et al., “A Roadmap to Reduce Information Inequities in Disability with
Digital Health and Natural Language Processing,” ed. Benjamin P. Geisler, PLOS Digital Health 1, no. 11
(November 17, 2022): e0000135, https://doi.org/10.1371/journal.pdig.0000135.
91. Anne G. Copay et al., “Understanding the Minimum Clinically Important Difference: A Review of
Concepts and Methods,” The Spine Journal 7, no. 5 (September 2007): 541–46, https://doi.org/10.1016/j.
spinee.2007.01.008; Roman Jaeschke, Joel Singer, and Gordon H. Guyatt, “Measurement of Health
Status,” Controlled Clinical Trials 10, no. 4 (December 1989): 407–15, https://doi.org/10.1016/0197-
2456(89)90005-6; Anna E McGlothlin and Roger J Lewis, “Minimal Clinically Important Difference,”
JAMA Guide to Statistics and Methods 312, no. 13 (2014): 1342–43.

233
in terms of its capacity for accuracy, as well as its utility in summary and translation tasks.92
What remains under-studied are the changes that AI brings about vis-à-vis new formations of
autonomy, expertise, and ground truth. To this point, we should begin by looking at existing
models in healthcare that foreground interdependency, intersubjectivity, and relationality.
The biopsychosocial model for pain management was originally developed in the mid-1970s, a
time when “science itself was evolving from an exclusively analytic, reductionistic, and specialized endeavor to become more contextual and cross-disciplinary.”93
The original, interdisciplinary findings that led to the biopsychosocial model found that in order
“to understand and respond adequately to patients’ suffering—and to give them a sense of being
understood—clinicians must attend simultaneously to the biological, psychological, and social
dimensions of illness.”94
Studying the impact of the biopsychosocial model twenty-five years into its widespread adoption
for pain management, Borrel-Carrió et al. find an explicit link to information behavior, and a
more nuanced understanding of how autonomy works in clinical decision making:
92. Charlotte Blease et al., “Generative Language Models and Open Notes: Exploring the Promise and
Limitations,” JMIR Medical Education 10 (January 4, 2024): e51183, https://doi.org/10.2196/51183;
Adam Bohr and Kaveh Memarzadeh, “The Rise of Artificial Intelligence in Healthcare Applications,” Artificial Intelligence in Healthcare, 2020, 25–60, https://doi.org/10.1016/B978-0-12-818438-7.00002-2; E. Parimbelli et al., “A Review of AI and Data Science Support for Cancer Management,” Artificial Intelligence
in Medicine 117 (July 2021): 102111, https://doi.org/10.1016/j.artmed.2021.102111.
93. Francesc Borrell-Carrió, Anthony L. Suchman, and Ronald M. Epstein, “The Biopsychosocial Model 25
Years Later: Principles, Practice, and Scientific Inquiry,” Annals of Family Medicine 2, no. 6 (November
2004): 576, https://doi.org/10.1370/afm.245. 94. Borrell-Carrió, Suchman, and Epstein, “The Biopsychosocial Model 25 Years Later,” 576.

234
Most patients desire more information from their physicians, fewer desire direct participation in clinical decisions, and very few want to make important decisions without the
physician’s advice and consultation with their family members. This does not mean that
patients wish to be passive, even the seriously ill and the elderly. In some cases, however,
clinicians unwittingly impose autonomy on patients. Making a reluctant patient assume
too much of the burden of knowledge about an illness and decision making, without
the advice from the physician and support from his or her family, can leave the patient
feeling abandoned and deprived of the physician’s judgment and expertise. The ideal,
then, might be ‘autonomy in relation’—an informed choice supported by a caring relationship.95
The caring relationships that support patients’ choices, indeed, that support patients’ sense
of self, effectively blur normative distinctions between categories. As psychologist George Engel wrote in the original publication describing the model: “the boundaries between health and
disease, between well and sick, are far from clear and never will be clear, for they are diffused by
cultural, social, and psychological considerations.”96
More recent reappraisals of the biopsychosocial model find that this emphasis in the original
call for a blurring of analysis, cutting across modalities and methodologies, is still largely out of
reach: how can the “fuzzy thinking” around social and environmental factors be held alongside
the pathology of physiological mechanisms? New, interdisciplinary research methods, alongside
both clinical training and community health education are seen as ways to broaden understanding and expectations of how the pain is socially, environmentally, psychologically, and biologically situated.97
[...]
In 1963, Michel Foucault characterized the emergence of clinical medicine over the course of the
19th century as “that opening up of the concrete individual, for the first time in Western history, to the language of rationality, that major event in the relationship of [people] to [themselves]
95. Borrell-Carrió, Suchman, and Epstein, “The Biopsychosocial Model 25 Years Later,” 579.
96. George L. Engel, “The Need for a New Medical Model: A Challenge for Biomedicine,” Science 196, no.
4286 (April 8, 1977): 132, https://doi.org/10.1126/science.847460.
97. Michael K. Nicholas, “The Biopsychosocial Model of Pain 40 Years on: Time for a Reappraisal?,” Pain
163, no. S1 (November 2022): S10, https://doi.org/10.1097/j.pain.0000000000002654.

235
and of language to things.”98
Where Foucault situates his analysis in the space of the clinic, describing the massive shift in
knowledge production that modern medical practice initiated, poet Anne Boyer examines the
contemporary emergence of a different paradigm, in a different kind of space: “The pavilion, on
the other hand, is a tangle of directions. Money and mystification, not knowledge or ignorance,
are its cardinal points.”99 The cancer pavilion, where we go for treatment, enacts the allegory of
the pavilion as a “temporary and luxurious architecture erected for the purposes of the powerful,
adjacent to something else—in cancer’s case, adjacent to all the rest of what we call life.”100
What happens in the pavilion, adjacent to life, that is equivalent to the “opening up” in the relationship of people to themselves, and of language to things?
Patients are engaged in the measurement of their own quality of life. Opening up, in time,
through actions of self-evaluation, self-reflection, self-disclosure, self-reporting.
Who is the self who evaluates, reflects, discloses, reports?
The concept of intersubjectivity holds that subjectivity needs the recognition of another: individual or collective, or through the relational networks of community. Intersubjectivity emphasizes
the way perceptions, experiences, and interpretations are shaped by interactions with others.
Where “Identification is the detour through the other that defines a self,” as literary theorist
Diana Fuss has shown, “This detour through the other follows no predetermined path, nor does
it travel outside history and culture.”101
Where this recognition is automated, or technologically mediated, the detour’s path becomes a
design choice. At the center is likely a screen. In Crampton et al.’s scoping review of how health
98. Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, 3rd edition (London:
Routledge, 2003), xiv.
99. Anne Boyer, The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care (Farrar, Straus and Giroux, 2019), 52.
100. Boyer, The Undying, 51.
101. Diana Fuss, Identification Papers: Readings on Psychoanalysis, Sexuality, and Culture (Routledge,
1995), 2.

236
information technology affects patient-provider relationships, the screen is shown as a shared
artifact that holds, interrupts, and redirects attention:
Clinician gaze at the screen was significantly associated with the patient’s gaze at the
screen. Further analysis showed that clinician-initiated gaze at the screen, the patient,
or other objects were significantly followed by the patients, resulting in a conjugate gaze
[looking at the same thing]. In contrast, patient-initiated gaze patterns were not always
followed by clinicians. The authors identified significant patterns of the patient’s gaze at
the clinician followed by the clinician’s gaze at the monitor and of the patient’s gaze at
the screen followed by the clinician’s gaze at the patient.102
Are patient and doctor speaking to one-another or are they speaking about, around, through,
something external—diagnosis, disease, impairment, treatment, data? If they are speaking at
all—studies of EHR use in the exam room show that interaction with electronic health records
often interrupt visual attention and produce prolonged periods of undifferentiated, unproductive,
inattentive silence.103
Where the technology is seen as having agential input on the clinical encounter, it is often felt to
be “a manifestation of external policies” at the “expense of narrative information, and sometimes
even of patient agenda.”104
[...]
We recognize one another through intermediary objects. While much of the research literature
has applauded the value of new technological tools in providing easy contact between patient
and provider, the quality of contact, the effect of reinforcement feedback, and the responsiveness
of clinicians are not evaluated.
What is the effect of a survey, a test, a portal message that is not acknowledged, discussed?
102. Noah H Crampton, Shmuel Reis, and Aviv Shachak, “Computers in the Clinical Encounter: A Scoping Review and Thematic Analysis,” Journal of the American Medical Informatics Association 23, no. 3
(May 1, 2016): 662, https://doi.org/10.1093/jamia/ocv178.
103. Richard L. Street et al., “Provider Interaction with the Electronic Health Record: The Effects on
Patient-Centered Communication in Medical Encounters,” Patient Education and Counseling 96, no. 3
(September 2014): 319, https://doi.org/10.1016/j.pec.2014.05.004. 104. Crampton, Reis, and Shachak, “Computers in the Clinical Encounter,” 662.

237
[...]
From pattern discrimination to pattern recognition
“We do not look like people: we look like people with cancer . We resemble a disease before we
resemble ourselves.”105
Recognition needs repetition.
Gathering patients’ experience into an object of knowledge shapes the topos of cancer life, where
one learns, and speaks, both anonymously and intimately, first as data, then as a pattern of life.
[...]
Nomina sunt numina [names are divine], can be interpreted as, for instance: there is a perfect
correspondence between a word and the thing it names, or that to name something is to bring it
into existence, or that language is more-than-human.106
[...]
Winograd and Flores: “The need for continued mutual recognition of commitment plays the role
analogous to the demands of autopoiesis in selecting among possible sequences of behaviors”
[italics mine].107 The reciprocal actions of commitment and recognition shape behavior, ensuring
that all behavior is directed towards the expression of coherent patterns of life.
Language, as Winograd and Flores proposed, and contemporary natural language processing
techniques uphold, is not an index of objective meanings, but a chain of commitments in a ‘consensual domain.’ Biologist and philosopher Kriti Sharma further unpacks the ubiquitous function
105. Boyer, The Undying, 43.
106. Lyn Hejinian, “The Rejection of Closure,” in The Language of Inquiry (Berkeley: University of California Press, 2000), 52.
107. Winograd and Flores, Understanding Computers and Cognition, 63.

238
of commitment, considering a shift towards modeling ecologies in terms of “interdependence:”
first, “a shift from considering things in isolation to considering things in interaction,” then, a
shift “from considering things in interaction to considering things as mutually constituted, that is,
viewing things as existing at all only due to their dependence on other things.”108
This view assumes a capacity to accept the world as contingent rather than conventional: things
are the way they are not because of arbitrary choices, or even the imposition of singular value
systems, but because of dynamic, intricate, highly interdependent and highly ordered processes—from genomics to climate to toxicity to biochemistry to culture to language—that inhere in
objects. It is the interdependence of these processes that give rise to the term “flower” over and
over again, and precisely what makes flowers appear so obvious, vivid, and stable as objects.109
[...]
Again, Winograd and Flores: “Language does not convey information. It evokes an understanding, or ‘listening,’ which is an interaction between what was said and the preunderstanding
already present in the listener” [italics mine].110
What does this preunderstanding consist of, and why is it there?
Preunderstanding, or prior knowledge is bias. A heightened sense of where to look first when
searching for something. It can be imposed (purposefully or not) by the model’s designers, it can
be in the training data, in the self-supervised tuning of the model’s parameters as it learns, or in
the interpretation of the model’s output. It is indispensable to the functionality of AI models.
In Bayesian statistics, a prior probability is used to represent initial beliefs about something uncertain. This is bias that helps situate the learning process: a first guess, usually based on some
108. Kriti Sharma, Interdependence: Biology and Beyond, Meaning Systems (New York: Fordham University Press, 2015), 2.
109. Sharma, Interdependence: Biology and Beyond, 14.
110. Terry Winograd and Fernando Flores, “On Understanding Computers and Cognition: A New Foundation for Design,” Artificial Intelligence 31, no. 2 (February 1987): 250, https://doi.org/10.1016/0004-
3702(87)90026-9.

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past experience about what is likely. Priors are what we knew before, all that we bring to the
question at hand.
As AI works to balance specificity with generalizability, priors help define a generalized shape,
and the boundaries of the search space. Informative priors shed light on the task under consideration, uninformative priors provide a general shape to the expected outcome, although without
any specificity. Regularization priors—e.g. Laplace, Gaussian (normal), Lasso, Ridge—keep the
model from overfitting, and help it to generalize to new data. Constraints are added to keep the
parameters from becoming too complex, or falling too far outside of a specific pattern of distribution.
Researchers working to instill AI systems with the capacity for abstract reasoning, including
Melanie Mitchell and Francois Chollet, look to move past the compute-intensive inductive pattern recognition of contemporary large language models by incorporating transductive methods
that use human reasoning as a template:
We are born with priors about ourselves, about the world, and about how to learn [...]
These priors are not a limitation to our generalization capabilities; to the contrary,
they are their source [...] To learn from data, one must make assumptions about it—the
nature and structure of the innate assumptions made by the human mind are precisely
what confers to it its powerful learning abilities.111
Chollet provides this schema to illustrate how human priors approximate generalizability, as it
is considered in the design of AI systems: Low-level priors tell us about the structure of our own
sensorimotor space, what we feel and move with. Meta-learning priors determine how we learn:
assumptions about the structure of knowledge and objects, and ideas about causality and continuity. High-level knowledge priors are our notions about how to orient ourselves and navigate
through spaces, our social intuition, and sense of what it means to have goals, values, and private thoughts. At every level, prior knowledge prepares us to sense patterns, make choices, and
understand meaning, particularly when we don’t know exactly what we’re looking for.
111. François Chollet, “On the Measure of Intelligence,” arXiv:1911.01547 [Cs], November 25, 2019,
http://arxiv.org/abs/1911.01547, 24.

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[...]
In terms of bringing patient-generated health data into clinical practice, automation has been
embraced for its promise of expanded access and improved patient outcomes, while at the same
time drawing concern for data privacy and the potential for algorithmic bias to adversely affect
patient care decisions.112 With these risks in mind, researchers point to the need for assessment
of new data practices to be inclusive and equitable, with a broad spectrum of viewpoints, including the participation of patient advocates and health workers.113
The use of predictive tools to regulate, pathologize, manage, and draw knowledge from people’s
lives is concerning “not because it creates new inequities, but because it has the power to cloak
and amplify existing ones,” notes artist and technologist Mimi Onuoha.
Onuoha characterizes this power as algorithmic violence, encapsulating “the violence that an
algorithm or automated decision-making system inflicts by preventing people from meeting their
basic needs.”114 Examples of algorithmic violence “occupy their own sort of authority [...] rooted
in rationality, facts, and data, even as they obscure all of these things”
“Machine prediction of social behaviour” argues Abeba Birhane, “is not only erroneous but also
presents real harm to those at the margins of society.” In their paper “The Impossibility of Automating Ambiguity”, Birhane exposes a fundamental factor in this failure as the under-theorized
reliance on accuracy as a measure of AI effectiveness.115
112. Giovanola and Tiribelli, “Beyond Bias and Discrimination;” David A. Gudis et al., “Avoiding Bias
in Artificial Intelligence,” International Forum of Allergy & Rhinology 13, no. 3 (March 2023): 193–95,
https://doi.org/10.1002/alr.23129; Dora Huang, Leo Anthony Celi, and Zachary O’Brien, “Biases in
Machine Learning in Healthcare,” in AI in Clinical Medicine, ed. Michael F. Byrne et al., 1st ed. (Wiley,
2023), 426–36, https://doi.org/10.1002/9781119790686.ch39; Pankaj Khatiwada et al., “Patient-Generated Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for Data
Security and Privacy,” Journal of Personalized Medicine 14, no. 3 (March 3, 2024): 282, https://doi.
org/10.3390/jpm14030282.
113. Melanie J. Calvert et al., “Patient Reported Outcome Assessment Must Be Inclusive and Equitable,”
Nature Medicine 28, no. 6 (June 2022): 1120, https://doi.org/10.1038/s41591-022-01781-8.
114. Mimi Onuoha, “Notes on Algorithmic Violence,” February 7, 2018, https://github.com/MimiOnuoha/
On-Algorithmic-Violence.
115. Abeba Birhane, “The Impossibility of Automating Ambiguity,” Artificial Life 27, no. 1 (June 11,
2021): 44, https://doi.org/10.1162/artl_a_00336.

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Accuracy, unlike precision (consistency), relies on prior knowledge: how close a prediction is to a
known measurement, ground truth. Automating ambiguity would require optimizing for something other than accuracy.
Wendy Hui Kyun Chun, in her book Discriminating Data, qualifies the link between discrimination and recognition in terms of difference (discrimination) and similarity (recognition). To assess
a recognition as accurate requires precognition: it involves evaluating various criteria in terms of
properties we already know how to discriminate between. “Classification systems require the prior construction or discovery of ‘invariant’ features, on the basis of which they assign and reduce
objects.”116 In computer science “pattern discrimination” describes the “imposition of identity on
input data, in order to filter (i.e., to discriminate) information from it.”117 Recognition, on the
other hand, is a correlated assembly of shared context, shared features, and shared relations. It
is a form of identification that has been reciprocated.
[...]
How recognition is automated:
1. Do I recognize you?
2. How am I to believe you?
To the error alert which reads “We don’t recognize this device”: I understand you to mean that
you don’t store your data on my device (in the form of an authenticating or tracking cookie).
Data is a mark and a token, making recognition possible. The token indicates consent (an agreement to your terms). You don’t recognize me (my device) because I have not provided consent
to be recognizable (to store data / a cookie). This is to say: consent requires recognition, as
much as recognition requires consent.
116. Wendy Hui Kyong Chun, Discriminating Data: Correlation, Neighborhoods, and the New Politics of
Recognition (Cambridge, Massachusetts: The MIT Press, 2021), 212.
117. Hito Steyerl et al., Pattern Discrimination, x.

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And for authentication: please state your name, your date of birth, and in your own words,
please describe what brings you here today?
Recognition needs repetition.
Minimal Assumptions
Alison Kafer, in her close reading of the language used by Margaret Price to introduce difficult
material—a trigger warning—articulates how such warnings are “a matter of access rather than
avoidance.” They encourage listeners to “think about what kinds of support they might need in
order to engage with material” as well as describing alternate ways of experiencing the content,
such as through a printed page, with the help of an interpreter, or asynchronously, in another
time and place. “In this framing,” Kafer finds, “the trigger warning is about making the content
of the talk accessible to anyone who wants it; quite simply, it’s about accessing the material.”118
Kafer builds on this example to consider not just the ways access is instituted through gestures
like Price’s introduction, but how notions of access can be understood through the lens of trigger
warnings, as the preparation of a space or process. Given that “access addresses not only how a
space is designed but also what happens within it,” how can processes such as consent and safe
disclosure be approached as design challenges?119
The case of consent in passive data collection from apps, wearables, fitness trackers, etc. (referred to from the perspective of human-computer interaction (HCI) as examples of ubiquitous
computing), reveals the complexities of approaching consent, and decision-making in general, as
an ongoing or ambient process rather than an event. This is particularly acute for the case of
persuasive design, or devices that aim to change user behavior.120
118. Alison Kafer, “Un/Safe Disclosures: Scenes of Disability and Trauma,” Journal of Literary & Cultural
Disability Studies 10, no. 1 (March 2016): 2, https://doi.org/10.3828/jlcds.2016.1.
119. Kafer, “Un/Safe Disclosures,” 3.
120. Yolande Strengers et al., “What Can HCI Learn from Sexual Consent?: A Feminist Process of Em- bodied Consent for Interactions with Emerging Technologies,” in Proceedings of the 2021 CHI Conference
on Human Factors in Computing Systems (CHI ’21: CHI Conference on Human Factors in Computing Systems, Yokohama Japan: ACM, 2021), 5, https://doi.org/10.1145/3411764.3445107.

243
Ewa Luger et al. address the ways in which ubiquitous computing complicates the performance
of consent requirements, such as end user license agreements, having “decoupled users from devices, presenting no clear moment for consent to occur.”121
Josef Nguyen and Bo Ruberg have highlighted approaches to consent as a design challenge for
games in particular, and human-computer interaction (HCI) in general, through the lens of
“consent mechanics,” as “a set of unique difficulties and potential solutions surrounding the question of how to design meaningful and ethical interactive opportunities for technology users to
negotiate consent,” emphasizing the process and nuance of consent rather than one-time compliance-driven interactions.122
Yolande Strengers et al. apply the T.E.A.S.E. framework for consent processes developed out of
BDSM communities to “emerging technologies that enable interactions that act on, act with, or
act like bodies,” recognizing “the ways in which bodies (artificial and human) are entwined with
processes of consent, and how consent is situated in physical and virtual space and time within
specific contexts and experiences.”123 This framework establishes consent as an ongoing, emergent process that is heavily dependent on transparent, mutual communication, where T.E.A.S.E.
stands for: Traffic lights (ways to signal “stop”, “slow down” and “continue,” even nonverbally);
Establish ongoing dialogue (make the process interpretable); Aftercare (or, analysis of limits,
expectations, and desires); Safewords (the capacity to immediately and easily withdraw from
actions in mid-process); and Explicate soft/hard limits (empower participants to recognize their
own changing attitudes in mid-process by setting and revising a spectrum of limits).
Often, the mechanics of consent for games are implied through a legal metaphor, imagining a
game as a magic circle. In this view, real legal limits are withheld in the virtual world of games,
121. Ewa Luger et al., “How Do You Solve a Problem like Consent?: The Workshop,” in Proceedings of the
2014 ACM International Joint Conference on Pervasive and Ubiquitous Computing: Adjunct Publication
(UbiComp ’14: The 2014 ACM Conference on Ubiquitous Computing, Seattle Washington: ACM, 2014),
613, https://doi.org/10.1145/2638728.2641676.
122. Josef Nguyen and Bonnie Ruberg, “Challenges of Designing Consent: Consent Mechanics in Video
Games as Models for Interactive User Agency,” in Proceedings of the 2020 CHI Conference on Human
Factors in Computing Systems (CHI ’20: CHI Conference on Human Factors in Computing Systems, Honolulu HI USA: ACM, 2020), 1, https://doi.org/10.1145/3313831.3376827. 123. Strengers et al., “What Can HCI Learn from Sexual Consent?,” 3.

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and what happens in the course of play is considered to be within the scope of consent of the
players. Noting that the magic circle metaphor is used to protect “spaces for play, tools for narrative, and the chance to build a new life,” legal scholar Joshua Fairfield argues for greater attention to consent mechanics and community self-regulation in games such that “virtual worlds may
be able to generate community norms usable by real-world courts as a source of legal rules”.124
Una Lee and Dann Toliver’s Building Consentful Tech project, while foregrounding the value of
autonomy in both bodily and datafied interactions, suggests adapting guidelines from community accountability practices to accommodate the distributed nature of digital bodies.
125 In drawing
a qualified equivalency between physical notions of consent and data ethics, Lee and Toliver invite further articulation of how the design of consent-centered technological tools and platforms
understands individual autonomy in relation to notions of decentralization and interdependence.
[...]
Disability rights activist Mia Mingus describes access intimacy alongside related concepts of
“physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy” as
“that elusive, hard to describe feeling when someone else ‘gets’ your access needs. The kind of
eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it
can happen with complete strangers, disabled or not, or sometimes it can be built over years. It
could also be the way your body relaxes and opens up with someone when all your access needs
are being met.”
Mingus goes on to distinguish access intimacy from compulsory or compliance-oriented access:
“Access intimacy is not just the action of access or “helping” someone. We have all experienced
access that has left us feeling like a burden, violated or just plain shitty. Many of us have experienced obligatory access where there is no intimacy, just a stoic counting down of the seconds
until it is over.”
124. Joshua A. T. Fairfield, “The Magic Circle,” Vanderbilt Journal of Entertainment and Technology Law
14 (2012): 825.
125. Una Lee and Dann Toliver, “Building Consentful Tech,” 2017, https://www.consentfultech.io/.

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Access intimacy can be minimal, silent, passive: “sometimes it is someone just sitting and holding your hand while you both stare back at an inaccessible world.”126
[...]
Inspired and informed by Mingus’s naming of the concept of access intimacy, I propose a set
minimal assumptions to identify the operational degrees of comfort and consent that shape how
we share information:
1. Standing back, giving space: Listening, speaking, appearing to all who witness. At a distance from all others. I experience a low level of detail, only indirect, relayed interactions,
ephemeral messages; symbolic, not sensory representations.
2. Witnessing and being witnessed: Listening, speaking, appearing to you. Not others.
Those I consent to hear may speak to me. I may speak to those who consent to listen. I
will not hear others when they speak, others will not hear me. I experience a higher level
of detail, both sensory and symbolic representations. Direct and indirect interaction at a
distance, persistent messages. Waiting.
3. Nearby, standing with or beside: Listening, speaking, appearing with a group. Anything
any of us can hear, we all can hear. Any message appears to be from all of us, together.
We appear as a group formed of individuals. Only direct Interaction, at a distance or
close. Promising to wait.
4. In contact, touching: Haptic, textural feedback between us. Ephemeral messages. I may
choose to include tone indicators with any message or action. I can filter, or translate,
tone indicators added by others. Being patient.
5. Holding, supporting: listening, speaking, appearing through you. I appear as indistin126. Mia Mingus, “Access Intimacy: The Missing Link,” Leaving Evidence (blog), 2011, https://leavingevi- dence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/.

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guishable from you. I only hear what you hear. You speak for me. Anticipation.
6. Falling together: feeding back; illegibility, only close interaction, sensory rather than symbolic representation. Everything indicates its tone. Listening, speaking, appearing as you.
You and I appear as indistinguishable from each other. You and I happen to be in the
right place at the right time.
These fragile chains persist through affective stances:
• Knowing (bias, belief, preference, embodiment)
• Listening (durational attunement to relation and environment at multiple scales)
• Being careful (building iteratively and according to agreed-on protocols)
• Being immediate (reinforcing learning, engagement, and position)
• Being interpretive (recognizing the limits of shared meaning and what cannot be translated)
• Being intersubjective (the collective work of producing and managing viewpoints)
[...]
Computer scientists Chris Olah and Adam Jermyn, in arguing for more qualitative methods in
the interpretation of AI models, describe what they call the signal of structure: “any structure
in one’s qualitative observations which cannot be an artifact of measurement or have come from
another source, but instead must reflect some kind of structure in the object of inquiry, even if
we don’t understand it.” What they are describing here is how recognition happens qualitatively. This is an approach that works on and alongside quantitative methods as a particular set of

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techniques for listening.127
Practiced skills of listening and eliciting are critical for qualitative research. In a review of
research methods for developing patient reported outcome measures, Brédart et al. outline the
various listening modes to be applied when formulating PROMs through an interview process:
• Active listening: Listen with attention to the interviewee’s speech; participate actively,
prompt with an openness to go further.
• Attentive silences: Differentiate between heavy silence after an intrusive question, silence
which allows one to take breath, silence to reflect upon the question, and silence in the
rhythm of speech.
• Reflecting: Reformulate and reflect back what you hear; encourage further disclosure.
• Synthesizing: Check understanding of what you hear before moving to another topic; give
the interviewee the opportunity to correct if there is misunderstanding; indicate that the
interviewee’s narrative has been heard.
• Recognizing resistance: In face of avoidance or unauthentic testimony, reflect on what
happens, underline that there is no right or wrong answer, revisit and rearticulate the
aims of the research.128
[...]
Métis anthropologist and scholar of Indigenous studies Zoe Todd, in conversation with their collaborator, sound artist Am Kanngieser, describes the role of consent in environmental research,
as an ongoing, continuous obligation to renew one’s relationship to the place of study. This
127. Chris Olah and Adam Jermyn, “Reflections on Qualitative Research,” Transformer Circuits Thread
(blog), March 2024, https://transformer-circuits.pub/2024/qualitative-essay/index.html.
128. Anne Brédart et al., “Interviewing to Develop Patient-Reported Outcome (PRO) Measures for Clinical Research: Eliciting Patients’ Experience,” Health and Quality of Life Outcomes 12 (February 5, 2014):
6, https://doi.org/10.1186/1477-7525-12-15.

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relationship is maintained through an awareness of context and specificity: “we all listen from a
particular place and that needs to be explicitly stated and that needs to be explicitly interrogated.” This cycle of stating and questioning fits with an understanding of consent as an ongoing
obligation that requires “constant conversation” and “respect for protocols” that determine where
permission needs to be sought, and what kinds of relations need to be built over time.129 Could
this continuous attention to building relations over time contribute to juridical applications of
informed consent—particularly in regard to the importance of documenting consent?130
Consider the practice of documenting a soundscape, listening to a site or situation as a bundle
of relations that change over time. The way sound artists and organizers Ultra-red use it, the
soundscape is not a prior, or natural state, but an active transformation, an organization of the
field of sound.
Ultra-red’s community-centered artistic practice developed alongside harm reduction work—needle exchange, tenant advocacy and mutual aid—where social workers and clients would make
use of field recording, group listening, and discussion of the recorded material, for reactivated
listening, or anamnesis.
131 In this setting, the soundscape is collectively assembled out of the
recordings and discussions as a mutable subject of inquiry, the place (topos) where articulations
of need, demand, and desire contribute to the process of shared decision-making. This is an
important idea for community-centered research, where the needs, demands, and desires of both
researchers and community representatives must be made clear, and continuously updated as
they shape one another.
Need, here, refers to the basic requirements or necessities that individuals or communities identify as essential. Demand is articulated when a need is expressed or called for, often in a more formal or organized manner. It represents a specific request or claim based on the identified needs.
Desire, on the other hand, encompasses a deeper, often unconscious motivation that drives in129. AM Kangieser, Zoe Todd, and Suzanne Kite, “Discussion with Am Kanngieser & Zoe Todd,” Ear
Wave Event, no. 7 (2023), https://earwaveevent.org/article/discussion-with-am-kanngieser-zoe-todd/.
130. Federal Policy for the Protection of Human Subjects (‘Common Rule’), §46.117.
131. Jean-Francois(Author) Augoyard and Henry Torgue, Sonic Experience: A Guide to Everyday Sounds
(McGill-Queen’s University Press, 2005, 156: for more, please see the discussion on anamnesis and its clin- ical applications in Analysis helps us to imagine better.

249
dividuals or communities beyond their immediate needs and demands. It includes the emotional
and subjective aspects that influence how needs and demands are perceived and acted upon.
As described in Ultra-red’s Militant Sound Investigation, the soundscape becomes apparent,
and is made accessible, by a disciplined and political act of deference, through listening. The
first step, this political act of deference, sets the terms of a shared purpose and collective effort:
“acknowledging an affiliation renders the first cut inscribed in the undifferentiated field of need,
demand, desire.” The investigation proceeds to compose the soundscape through a series of articulations, where “each cut is an opportunity for differentiating, acknowledging, and organizing the
field of sound.”132 Listening, with the aid of technology (e.g. microphone, audio recorder, pen and
paper), carries the “capacity to recall the investigators to silence” to “correct the tendency to fixate on demands that do not resonate with the curiosity, friendship, love” that hold the collective
effort together.133 By actively listening within the soundscape, investigators come to understand
how need, demand, and desire are interconnected, with demand being inclusive of both conscious
articulations responding to needs and the indivisible remainder known as desire.
For Am Kanngieser and others with auditory processing disorder, the field of sound is rendered
as an undifferentiated object, equally present in its multiple facets: “Every sound that I hear is
at the same level of importance. I don’t have a filter of a voice, or a wave, or a bird, or the wind,
it’s all at the same level of significance.”
Instead of addressing a generic reader, investigator, or witness, can neurodiverse approaches to
method be assumed? Would this alter prior notions of discipline, deference, and mutability within the listening field?
[...]
132. Ultra-red, 10 Preliminary Theses On Militant Sound Investigation, Artists & Activists (New York:
Printed Matter, 2008), 3.
133. Ultra-red, 10 Preliminary Theses On Militant Sound Investigation, 4.

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Conclusion: The ends of care
Hush now, don’t explain134
• Beyond instrumentality
• Beyond causality
• Beyond traditional boundaries (in medicine and otherwise)
• The question of accessibility
• And the question of trust
“The trust implicit in the virtuous practice of medicine demands that clinicians learn to reach
beyond their own assumptions in order to hear and be affected by the details of the unfamiliar
worlds of patients,” write Marina Tsaplina and Raymond Barfield, in their outline for the role of
imagination in the practice of health humanities: “This demands acknowledging the vulnerability
and variation of human bodies, including the clinician’s own, and training clinician imaginations
to perceive the way structural foundations of health and biopolitical power shape embodied
lives”.135 Care, the authors go on to articulate, should be oriented by both goals and processes. In
the face of unknown changes produced by the introduction of new technologies such as AI, it is
critical to reaffirm humane principles:
The fact of care is living in an entangled way, an agential commitment to interconnectedness.
• Care forms relations, or maintains / reinforces existing relations
• Care sets boundaries, creating enclosures of protected space and time
134. Billie Holiday, Don’t Explain, Transcript of lyrics (Decca, 1946).
135. Marina Tsaplina and Raymond Barfield, “The Role of the Imagination in the Practices of the Health
Humanities,” in The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and
Andrea Charise, 1st ed. (Routledge, 2020), 111, https://doi.org/10.4324/9780429469060-19.

251
• Care forms identities by naming ambiguities, becoming and inhabiting roles
• Care sets commitments (priorities)
• Care governs movement: speed, exchange, transfer
• Care is a protocol, it has an object: a way of acting-on, relating-to, being-with
Interdependence with technology and among people with different needs and situations gives
rise to new forms of expertise and autonomy. What can and cannot be specified about these new
forms?
There are certain experiences that cannot be fully specified in a human society without destroying the basic individual structural plasticity needed for the establishment of
consensual domains and the generation of language and, hence, for human creativity in
general. Love is one of these experiences, and as long as [humanity] has a language [we]
can become observers through the experience of love.136
Then it’s love. Love as a process of becoming unbodied (Belcourt); love that always means
nonsovereignty (Berlant); love that discriminates, separating like from other (Chun);137 the loving
perception that comes from traveling between worlds (Lugones).
136. Humberto R. Maturana and Francisco J. Varela, Autopoiesis and Cognition: The Realization of the
Living, Boston Studies in the Philosophy of Science, v. 42, xxix, (D. Reidel Pub. Co, 1980).
137. Chun, Discriminating Data, 241.

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From August 17—September 8, 2024, an exhibition entitled There is almost not an interval was
on view at Human Resources LA, a non-profit arts organization at 410 Cottage Home St. in Chinatown, Los Angeles. The exhibition was curated and presented as a supplement to this dissertation. The following artworks were included, their position in the exhibition space indicated in
the diagram on the following page (Fig. :
1. Jjjjjerome Ellis. excerpts from “The Clearing” (type on paper, (reproduction), 2021).
Design by Rissa Hochberger with additional design by Kelvin Ellis. Courtesy of the artist
and Wendy’s Subway.
2. Renee Gladman. “Untitled Math” (ink, pastel, and gouache on paper, 2024). Courtesy of
the artist.
3. Renee Gladman. “Untitled (Playing Warm)” (ink, pastel, and gouache on paper, 2023).
Courtesy of the artist.
4. Renee Gladman. “Untitled (Pink Moon, Yellow Rim)” (ink and pastel on paper, 2021).
Courtesy of the artist.
5. Renee Gladman. “Untitled Score, Violins” (ink, pastel, and gouache on paper, 2023).
Courtesy of the artist.
6. Theresa Hak Kyung Cha.”Mouth to Mouth” (b&w video with sound and printed card
THERE IS ALMOST NOT AN INTERVAL

253
(reproduction), 1975). Courtesy of the estate of Theresa Hak Kyung Cha and Electronic
Arts Intermix.
7. Will Rawls. “Sister Spell” (stop-motion animation, 1 min 52 secs, 2018). Performers:
Trinity Bobo, jess pretty. Cameos: Tess Altman, Ashai Gonzalez. Special Thanks: Anna
Craycroft.
8. Will Rawls. “Alpha Dance” (stop-motion animation, 1 min 33 secs, 2018). Performers:
Trinity Bobo, Ley, Angie Pittman, jess pretty. Special Thanks: Anna Craycroft.
9. Sarah Rara. “Untitled (Door)” (video, 59 minutes, 2024). Courtesy of the artist.
10. Allison Parrish. Excerpts from “Compasses” printed zine and wall text (reproduction),
2019). Courtesy of the artist and Sync journal.
11. Luke Fischbeck. “There is almost not an interval” (piano, photocopy and speakers, 2024).

254
Fig. 50. Exhibtion layout diagram. Numbers refer to artwork checklist on the previous page.

255
Fig. 51. Installation view. From left to right: Rara, Gladman, Cha, Rawls.

256
[...]
“People will never believe you are ‘without events.’ And that is why decay is slow, and why it is
not devastation.”138
[...]
A visitor enters the exhibition space from the street through a narrow aperture, a sliding metal
door partly shut. Light spills through the opening and casts a long beam that washes across the
floor and the far wall, where shadows and reflections from the outside world are projected. To
either side of this spill, pinpoints of light illuminate projection surfaces, drawings and printed
manuscripts held up by thin wooden supports. The interior door frames the far wall, a floor-toceiling projection of Theresa Hak Kyung Cha’s “Mouth to Mouth”: television static, a faintly
appearing mouth forms vowels in sequence. Music plays from speakers distributed around the
gallery and through an interior window on the floor above—my own piano composition, an unending progression of chord voicings (the same notes played in configurations that are by turns
open, tight, dissonant, light, sweet, etc). Passing through the gallery, by the rear entrance to the
building, a full sound system with subwoofer plays the audio from Theresa Hak Kyung Cha’s
video: water running, static fading in and out, mysterious, spectral sound slipping around corners. Benches are arranged inside and outside of the gallery. It is quiet and still, punctuated by
sounds that are separate from, but well-fit to the images. The disparate lengths of looping media—Rara’s video is more than an hour, Rawls’ two animations are each around a minute, Cha’s
work is around eight minutes—produces a sensation of loose, imperfect repetition.
[...]
Intervals are what a threshold makes, a here and there, (held) in suspension, a distinction (telling the difference), undifferentiated (holding difference), without separation, a crossing, where
limits meet, anticipation (a margin to move in), body horror (I’m an alien), reperforming events,
138. Renee Gladman, The Ravickians (Dorothy, a Publishing project, 2024): 45.

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Fig. 52. Renee Gladman. “Untitled Score, Violins” (ink, pastel, and gouache on paper, 2023). Courtesy of the artist.

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Fig. 53. Renee Gladman. “Untitled (Playing Warm)” (ink, pastel, and gouache on paper, 2023). Courtesy of the artist.

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switching (logic), binary, alternating, lenticular, talking back, the transformation of silence into
language and action, some temporalities (for sure), stop motion, flicker, duration, bracketing, the
suspension of judgment, the withholding of assent, the preconditions, the prior logic, intersection, coincidence, suture, stitch, montage, cut, rupture, glitch, break, gap, clearing, hesitation,
some kinds of waiting, losing control, building community, falling in love, between thought and
speech, between speech and act, between action and listening, between memory and futurity, between what’s in my head and what’s in yours, side by side, boundary objects, parallel selves, the
fantasy of continuity, a movement between the pieces, fragments of actual energy, time away, life,
a long take, notes in a chord, frames in a film, unnatural bridges. “Allegory, here, is material,”
Ian White wrote: “An interval, occupied.”139
[...]
My reason for organizing an exhibition as the conclusion, or supplement, to this dissertation is
to indicate, as Renee Gladman does with her drawings, “what it meant to be in narrative, to feel
narrative gather in my body and feel it work to move out of my body.”140 In white ink and pastel
on black paper (“the blackground,” as Fred Moten called it: “that nonrepresentational capacity
that lets all representation take place”), Gladman’s figuring bridges between diagram and notation, image, text, and meaning.141
Placing the artworks, each with their own individual relationship to the theme of intervals, into
a loosely coherent “state of suspension,” my aim was to offer viewers an encounter with the work
that was singular, easy to understand (relate to), but difficult to interpret in any singular way.142
Hard to grasp.
Performance studies scholar Ethan Philbrick, interviewing the artist and choreographer WIll
Rawls, pinpoints the technique of stop-motion animation as a way of foregrounding the lossiness
139. Ian White, ”What Is Material?” in Here Is Information. Mobilise (Lux, 2016): 288.
140. Renee Gladman, “Untitled (Environments),” E-Flux Journal, no. 92 (June 2018): 1.
141. Fred Moten, “An Index,” in One Long Black Sentence, by Renee Gladman (Ithaca Press, 2022), 4.
142. Lawrence Rinder, “The Plurality of Entrances, the Opening of Networks, the Infinity of Languages,”
in The Dream of the Audience: Theresa Hak Kyung Cha (1951 - 1982), ed. Constance Lewallen et al.
(University of California Press, 2001), 18.

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of capture, where sticky intervals between frames provide “an indication that not everything has
been captured.” Rawls characterizes this sensory effect as “friction inside the image.”143
Sarah Rara’s video “Untitled (Door)” is formally simple: a collection of archival photographs
and printed materials slide one after another into the frame. Refracted through a prismatic lens,
edges and hard lines become warped, spectral, translucent. Repeated figures of doorways, glass
doors, metal door handles, architectural plans for doors and door handles. Although not explicitly identified, the images are from philosopher Ludwig Wittgenstein’s Vienna home. For Rara,
whose persistent disability linked to vestibular nerve damage causes a re-ordering of the sensory
processing stack, doorways provide a stable frame for navigating interior spaces: the eye tells the
brain how to balance. Rara, in researching Wittgenstein’s detailed designs for the house, finds
affinity with the philosopher’s project to find orientation from inside of language: “A picture held
us captive. And we could not get outside it, for it lay in our language and language seemed to
repeat it to us inexorably.”144
[...]
“Intervals,” Trinh T. Minh-Ha observed, don’t “bring about any tremor like ‘passion,’ ‘death,’ or
‘love.’” It’s thanks to intervals, however, that “a direct relation is possible: a relation of infinity
assumed in works that accept the risks of spacing and take in the field of free resonances—or, of
indefinite substitutions within the closure of a finite work.”145
[...]
As Jjjjjerome Ellis puts it: “The contradiction of stuttering is that I’m both speaking and not
speaking.”146 Ellis, whose stutter opens what they refer to as clearings in the midst of communication, uses music, poetry, and visual art to explore the thesis “that Blackness, dysfluency and
143. Ethan Philbrick and Will Rawls, “Will Rawls by Ethan Philbrick,” BOMB Magazine (blog), September 26, 2023, https://bombmagazine.org/articles/2023/09/26/will-rawls-interviewed/.
144. Ludwig Wittgenstein, Philosophical Investigations, trans. G. E. M. Anscombe, 3nd ed., repr (Blackwell, 1989), 48.
145. Trinh T. Minh-Ha, “Beware of Wolf Intervals,” in Cinema Interval (Routledge, 1999): xii.
146. Ellis, “The Clearing”: 222.

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Fig. 54. Installation view. From left to right: Ellis, Gladman, Rawls, Cha.

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Fig. 55. Will Rawls. “Sister Spell” (stop-motion animation, 1 min 52 secs, 2018). Performers: Trinity Bobo, jess pretty.
Cameos: Tess Altman, Ashai Gonzalez. Special Thanks: Anna Craycroft.

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Fig. 56. Will Rawls. “Alpha Dance” (stop-motion animation, 1 min 33 secs, 2018). Performers: Trinity Bobo, Ley, Angie Pittman, jess pretty. Special Thanks: Anna Craycroft.

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Figs. 57-59. Sarah Rara. “Untitled (Door)” (Stills from 4K video, 59 minutes, 2024). Courtesy of the artist.

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music are forces that open time.”147 Each page on display in the exhibition is notation, a transcript of Ellis’s musical work that records sounds and language, weaving in quotations and the
temporal effects of dysfluent speech. Mara Mills and Rebecca Sanchez, in their study of disability as method, discuss how “Ellis plays with typography to represent stuttering and to design the
time of reading,” producing an effect that “suggests, but does not dictate, temporality for the
reader. We do what we will with the words and the pages, but we meet him in the clearing his
voice and typography create.”148
[...]
A barely-perceptible interval is space enough for holding movement between pieces that have
been cut apart or never really touched, whose relation is latent or obscured. Intervals are a space
of possibility, for “temporal refusal, temporal escape, temporal dissent.”149 We will approach
intervals as tainted binaries or boundaries: before and after, bodies and spaces, events and
images, internal and external, spoken and thought, original and translation. Forms to explore
include traveling in time, interpolating (imagined continuities), waiting (pausing, anticipating),
transducing (moving across one medium into another), flickering, hovering over, pivoting on, or
crossing of thresholds, pushing sequences out of order, ambivalence, and self-contradiction. Intervals show a special kind of coherence across duration, distance, or difference. Intervals are the
mechanics of memory and representation, the choreographies of reconstruction, where fiction and
testimony are glued together to assemble critical, speculative, fabulous histories.
Allison Parrish’s 2019 computer-generated text pieces, collectively titled “Compasses,” appear
in the exhibition as handwritten transcriptions placed at the threshold of each entrance to the
gallery. To create this work, Parrish devised an AI system that encodes words according to their
pronunciation, such that interpolation, or inventing points in the latent space between known
measurements, would produce imaginary words that a mouth would know as halfway between
147. Jjjjjerome Ellis, “The Clearing: Music, Dysfluency, Blackness and Time,” Journal of Interdisciplinary
Voice Studies 5, no. 2 (December 1, 2020): 216, https://doi.org/10.1386/jivs_00026_1.
148. Mara Mills and Rebecca Sanchez, eds., Crip Authorship: Disability as Method (New York, New York:
New York University Press, 2023), 1.
149. Ellis, “The Clearing,” 216.

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Fig. 60. Jjjjjerome Ellis. excerpts from “The Clearing” (type on paper, (reproduction), 2021). Design by Rissa Hochberger with additional design by Kelvin Ellis. Courtesy of the artist and Wendy’s Subway.

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Fig. 61. Allison Parrish. Excerpts from “Compasses” printed zine and wall text (reproduction), 2019). Courtesy of the
artist and Sync journal.

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the two pronunciations: EARTH - WARTH - WATER - WAIR - FIRE - FEIR - AIR - EAR -
EARTH.
Theresa Hak Kyung Cha’s 1975 video work “Mouth to Mouth” shows a static-filled screen, a
mouth, appearing as if reflected in the screen, forming vowel shapes in sequence. The synchronized non-diegetic soundtrack mixes static (noise) with the aleatory frequencies of water running, as if from a faucet or stream. Accompanying the video is a printed card which displays the
title of the work, and below that, a set of eight vowels written in Korean as Hangul characters.
Importantly, the vowels are not a translation of the title, although the pairing with the title
might imply this. The characters, as transcript or script, with the productive ambiguity of the
audiovisual components, open “the gap between signs and their referents to reveal modes of
reading, seeing, and listening capable of attending to those losses.”150
[...]
There is more to be said.
Speaking of forms, I want questions that take the shape of access. What film scholar Pooja Rangan terms “listening in crip time,” in which access constitutes the material and form of creative
work, rather than (hopefully) a sociotechnical horizon or (truthfully) a compliance-oriented
liability.151
I picture forms that support multiple and incomplete interpretations and translations, the “plurality of entrances” that is “ourselves writing” before any system of analysis is imposed (“poetry
without the poem”).152 I imagine a prefigurative politics of access, with all the untranslated,
unmediated, and unpredictable speeds and textures of illness, disability, and neurodiversity. To
see and be seen, as “a constellation of images and a set of visual experiences that create a frame
150. Kimberly K Lamm, “Mouth Work: Writing the Voice of the Mother Tongue in the Art of Theresa
Hak Kyung Cha,” Oxford Art Journal 43, no. 2 (December 2020): 175, https://doi.org/10.1093/oxartj/
kcaa011.
151. Pooja Rangan, “Listening in Crip Time,” Film Quarterly 76, no. 2 (December 1, 2022): 27, https://
doi.org/10.1525/fq.2022.76.2.25. 152. Roland Barthes, S/Z, trans. Richard Miller, (Blackwell, 1974), 5.

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Fig. 62. Theresa Hak Kyung Cha.”Mouth to Mouth” (Still from b&w video with sound, 1975). Courtesy of the estate
of Theresa Hak Kyung Cha and Electronic Arts Intermix.
Fig. 63. Theresa Hak Kyung Cha.”Mouth to Mouth” (printed card (reproduction), 1975). Courtesy of the estate of
Theresa Hak Kyung Cha.

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of beholding that mirrors back an image of the self as an object that belongs to it.”153
[...]
“There is almost not an interval. For a very long time everybody refuses and then almost without a pause almost everybody accepts. In the history of the refused [...] the rapidity of the
change is always startling.”154
The whiplash of recognition!
153. Lamm, “Mouth Work”: 181.
154. Gertrude Stein, “Composition as Explanation,” in Gertrude Stein: Selections (University Of California
Press, 2008): 217.

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Abduction
The sustained and tentative work of making educated guesses. “Feedforward loopings”
between observation and theory-making; thinking between the past, present and future.155
(See: Anticipation, Inference, Sampling)
Accessibility
Simply put, accessibility is an act of love.156 It can be thought of, together with disability,
as a socially constructed fact (where access is impeded or assisted as a function of culture, convention, design, etc.), as compliance, a matter of juridical distinction (detailed
in accessibility laws or guidelines, such as the Americans with Disabilities Act (ADA) or
Occupational Safety and Health Administration standards (OSHA)), and as a political
act of anticipating how best to accommodate diverse needs. (See: Accommodation, Compliance, Disability, Disability Justice, Impairment)
Accommodation
A specific change or modification made to an environment, policy, or procedure to ensure
that individuals with impairment or disability can access the world. (See: Accessibility,
Compliance, Disability, Disability Justice, Environment, Impairment)
Accuracy
How close a prediction is to a known measurement. (See: Ground Truth, Precision)
155. Adele E Clarke, “Anticipation Work: Abduction, Simplification, Hope,” in Boundary Objects and Beyond: Working with Leigh Star, ed. Geoffrey C. Bowker, 2016, 92.
156. Leah Lakshmi Piepzna-Samarasinha, “Making Space Accessible Is An Act Of Love for Our Communi- ties,” Creating Collective Access (blog), June 2, 2010, https://creatingcollectiveaccess.wordpress.com/mak- ing-space-accessible-is-an-act-of-love-for-our-communities/; Holly Tuke, “The True Impact of Accessibility,”
Life of a Blind Girl (blog), April 10, 2022, https://lifeofablindgirl.com/2022/04/10/the-true-impact-of-ac- cessibility/.
GLOSSARY

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Affect
Flows of intensity between and among subjects and objects that precede, or result from,
cognition, emotion, and expression.
Algorithmic Violence
“The violence that an algorithm or automated decision-making system inflicts by preventing people from meeting their basic needs,”157 where violence refers not to physical
brute force, but rather to prohibitive mechanisms or actions that negatively shape people’s experiences and opportunities.
Anamnesis
ἀνάμνησις [a calling to mind, remembrance]. In medicine, a patient’s retelling, in their
own words, of their medical history. Also referred to as recall retrospection. In the Platonic dialogue Meno (also Phaedo, and Phaedrus), a teacher asks questions to bring forth
knowledge a student already has, as the practice of calling tacit, timeless knowledge to
mind. In the Christian tradition, anamnesis figures centrally in the liturgy of eucharist:
“τοῦτο ποιεῖτε εἰς τὴν ἐμὴν ἀνάμνησιν [do this in remembrance of me]” (Luke 22:19).
(See: History (Hx), Life-Writing, Patient-Generated Health Data (PGHD), Poetics)
Analysis
Breaking something into pieces to learn about the patterns that form its identity. A
method or set of methods that may be, in turn: reductive, revealing, relational, instrumental (as in, making and using instruments), embodied, troubling... “the entanglement
of ideas and other materials” (Barad); a relay between totality and imagination (Glis157. Mimi Onuoha, “Notes on Algorithmic Violence,” February 7, 2018, https://github.com/MimiOnuoha/
On-Algorithmic-Violence.

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sant); “the intimacy of scrutiny” (Lorde).
158 (See: Data, Imagination, Information, Instrument, Synthesis)
Anticipation
The “politics of temporality and affect,” concerned with the “margin of maneuverability”
in which momentary possibilities are reconfigured.159 Preparing, optimizing, managing
uncertainties. (See: Abduction, Analysis, Apparatus)
Apparatus
“A thing that lies in wait or in readiness for something,” per Vilém Flusser’s definition: a
simulation of thought, a system or organizing principle that enables something to function.160 Theorized by Michel Foucault as dispositif, an apparatus holds the relationship
between discursive (what is said) and non-discursive (what is unsaid) practices.161 Karen
Barad’s philosophical framework of agential realism extends the concept of apparatus to
stress the interconnectedness of observers, instruments, and objects or phenomena being
studied: an apparatus is a boundary-drawing practice.162 (See: Discourse, Instrument,
Model, Outcome, Simulation)
Apperception
Cognition and perception together—awareness of sensation, where data becomes information through active and subjective interpretation. (See: Data, Information, Interpretability, Listening, Patient-Reported Outcome (PRO), Self-report)
158. Karen Barad, Meeting the Universe Halfway (Duke University Press, 2007), 30; Edouard Glissant,
“Relinked, (Relayed), Related,” in Poetics of Relation, trans. Betsy Wing (University of Michigan Press,
1997), 170; Audre Lorde, “Poetry Is Not a Luxury,” in Sister Outsider: Essays and Speeches (Ten Speed
Press, 2012), 44.
159. Clarke, “Anticipation Work,” 89-90.
160. Vilém Flusser, Towards a Philosophy of Photography (Reaktion Books, 2000), 21.
161. Michel Foucault, “The Confession of the Flesh,” in Power / Knowledge: Selected Interviews and Other
Writings 1972 - 1977, ed. Colin Gordon (Pantheon Books, 1981), 197.
162. Barad, Meeting the Universe Halfway, 140.

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Application programming interface (API)
A set of rules for how different computer programs should communicate with one another. The rules of an API describe a structure for making requests and responses, determining a program’s capacity for interoperability with other programs (See: Software as a
medical device (SaMD))
Aporia
A performative statement of doubt, uncertainty, or perplexity.
Artificial Intelligence (AI)
Artificial Intelligence (AI) is a widely used term to describe any tool or system that simulates, augments, or automates the way people make sense of the world. Legally, AI has
been defined in the US as
A machine-based system that can, for a given set of human-defined objectives,
make predictions, recommendations or decisions influencing real or virtual environments. Artificial intelligence systems use machine and human-based inputs
to- (A) perceive real and virtual environments; (B) abstract such perceptions into
models through analysis in an automated manner; and (C) use model inference to
formulate options for information or action.163
AI encompasses deep learning as well as machine learning, and some, but not all, natural
language processing and robotics (embodied AI). In the present historical moment a secondary definition is ascendant, in which AI refers broadly to any technology for predictive pattern matching. In its contemporary use of the term, AI is more likely to refer to
generative, unsupervised, generalizable, and stochastic processes of analysis and resynthesis that can be applied across modalities, rather than structured simulations optimized
for singular, specific tasks. (See: Apperception, Algorithmic Violence, Bias, Chain-of163. “National Artificial Intelligence Initiative,” 15 U.S. Code § 9401 (2021), https://uscode.house.gov/ view.xhtml?req=(title:15%20section:9401%20edition:prelim).

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thought (CoT), Diffusion, Embedding, Latent Space, Machine Learning, Inference, Large
Language Model (LLM), Model, Variational Autoencoder (VAE))
Attention
Focusing on some information while ignoring the rest. Attention is a fundamental cognitive process involved in perception, learning, memory, and decision-making. (See: Attunement, Noise, Signal, Transformer, Waste)
Attunement
Affective alignment between individuals. Attunement is a relational foundation for trust
and understanding, characterized by attention to cues (verbal and non-verbal, body language, tone, expression, etc) and the ability to perceive and understand one’s own emotions and those of others. (See: Affect, Attention, Coherent, Consent, Diffusion, Listening, Resonance, Soundscape)
Automated Decision-Making (ADM)
Decisions made on the basis of automated processes, including the derivation of profiles
based on perceived demographic or behavioral patterns related to a subject. ADM is restricted under various legal frameworks: European Union law preserves the rights of individuals to seek human intervention in decisions, while US law offers specific prohibitions
on the use of ADM such as access to housing or public assistance, and outlines a path
for ongoing audit of automated decision-making process for bias and lack of transparency.164 (See: Artificial Intelligence (AI), Algorithmic Violence, Predictive Decision Support
Intervention (DSI))
164. National Artificial Intelligence Initiative; “Regulation (EU) 2016/679 of the European Parliament
and of the Council of 27 April 2016 on the Protection of Natural Persons with Regard to the Processing
of Personal Data and on the Free Movement of Such Data, and Repealing Directive 95/46/EC (General
Data Protection Regulation),” Pub. L. No. OJ L 119, 2016/679 EU (2016), https://eur-lex.europa.eu/eli/
reg/2016/679/oj.

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Autopoiesis
Making, reproducing, and sustaining one’s self. An autopoetic organism, self, machine or
system consists of a “network of processes” which, “through their interactions and transformations regenerate and realize the network of processes (relations) that produced
them.”165
Biographic Mediation
The instrumentalization of life-writing in seeking aid: how we tell our stories in order to
receive care.166 (See: Anamnesis, Instrument, Hypomnemata, Life-Writing)
Biopsychosocial Model
First proposed in the mid-1970’s and widely adopted by clinicians, researchers, and
educators over the ensuing generation, the biopsychosocial model situates the complex
interface between medical knowledge and the needs of individual patients in “a way of
understanding how suffering, disease, and illness are affected by multiple levels of organization, from the societal to the molecular,” while simultaneously centering “the patient’s
subjective experience as an essential contributor to accurate diagnosis, health outcomes,
and humane care.” Put simply, “clinicians must attend simultaneously to the biological, psychological, and social dimensions of illness” in order “to understand and respond
adequately to patients’ suffering—and to give them a sense of being understood.”167 As a
proposal for rethinking medical perspective, this model drew from parallel developments
in biology such as systems theory, seeking to reconcile reductive and holistic explanations, “to answer the ‘why?’ and the ‘what for?’ as well as the ‘how?’.”168 (See: Bodymind,
165. Humberto R. Maturana and Francisco J. Varela, Autopoiesis and Cognition: The Realization of the
Living, Boston Studies in the Philosophy of Science, v. 42 (D. Reidel Pub. Co, 1980), 135.
166. Ebony Coletu, “Introduction Biographic Mediation: On the Uses of Personal Disclosure in Bureaucracy and Politics,” Biography 42, no. 3 (2019): 468, https://doi.org/10.1353/bio.2019.0055.
167. Francesc Borrell-Carrió, Anthony L. Suchman, and Ronald M. Epstein, “The Biopsychosocial Model
25 Years Later: Principles, Practice, and Scientific Inquiry,” Annals of Family Medicine 2, no. 6 (November
2004): 576, https://doi.org/10.1370/afm.245.
168. George L. Engel, “The Need for a New Medical Model: A Challenge for Biomedicine,” Science 196,
no. 4286 (April 8, 1977): 134, https://doi.org/10.1126/science.847460.

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Exposome)
Bodymind
A vector in disability discourse away from dualist (e.g. Cartesian) separations of bodily and mental knowledge, experience, causes and effects: “We can refer meaningfully, if
tentatively, to “mind” and “body,” but ultimately the two are so fully integrated that they
should also be considered one,” in that “mental and physical processes not only affect
each other but also give rise to each other.”169 (See: Biopsychosocial Model)
Chain-of-thought (CoT)
An AI technique, inspired by aspects of human abstract reasoning, that solves complex
problems by breaking them into separate steps. CoT models can make use of transductive
inference to reason through problems that are not easily solved by generalizing from patterns, such as causal and consequential reasoning, planning and strategy, and ambiguous
or context-sensitive problems from math word problems to ethics. (See: Artificial Intelligence (AI), Inference, Transduction)
Coherent
Like two waves arriving at the shoreline in the same moment. (See: Signal)
Common Sense
The way our own senses fit together with one another, and become legible to others. As
Arendt uses the term, it is protection from alienation, both politically and bodily: “It is
by virtue of common sense that the other sense perceptions are known to disclose reality
and are not merely felt as irritations of our nerves or resistance sensations of our bod169. Margaret Price, “The Bodymind Problem and the Possibilities of Pain,” Hypatia 30, no. 1 (2015): 269.

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ies.”170 (See: Discourse, Disidentification, Epistemology, Ideology, Interpellation)
Composition
An action of “re-listening:” a set of collectively defined procedures that are iteratively
applied, tested, and reworked. Making a form, not like building a house out of building
materials (construction), but like describing something to create a mental picture, or
getting in the habit of exercising. (See: Listening, Poetics, Soundscape)
Compression
In terms of representation, compression is a process of making a simpler or more lightweight representation from an original version. A lossy compression is created, in part,
by removing information that is not deemed meaningful, such that the reconstituted
copy has lost some aspect of the original. Compression is a fundamental process in digital
representations, including AI. Conceptually, compression can serve as a metaphor for any
simplified communication of complex reality: thought into language, an explanation, a
diagram, etc. (See: Embedding, Information, Latent Space, Sampling, Variational Autoencoder)
Consent
A negotiation of agency, concerning both what others allow us to do to them, and what
we allow others to do to us.
Crip
Similar to queer in that it is a slur reclaimed as a term of self-identity, identifying as
crip (like queer) is a form of resistance against cultural homogenization.171 Crip expresses
170. Hannah Arendt, “Action,” in The Human Condition, 2. ed., repr (Univ. of Chicago Press, 2006), 209.
171. Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability, Cultural Front (New York:
New York Univ. Press, 2006), 33.

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the non-compliant, anti-assimilationist position that disability is a desirable part of the
world, while simultaneously questioning and disavowing the order established through
notions of able-bodiedness. When used as a verb, to crip is to engage in “practices of
critique, alteration, and reinvention of our material-discursive world,”172 to re-center narratives of disability in contexts where it has been overlooked or excluded.173 (See: Accessibility, Disability, Disability Justice, Impairment)
Data
Raw stuff that, through a process of interpretation, becomes information that may have
meaning. Can have its own structure and context, or not. Can be material or abstract.
Can be of one kind or many. (See: Ground Truth, Information, Interpretation)
Debility
A state of weakness, incapacity, or impairment, limiting an individual’s ability to perform
activities of daily life. Certain bodies are produced as debilitated through systems of oppression, globalization, and the politics of health. Rather than occupying an in-between
state on the spectrum between life and death, Jasbir Puar specifies debility as “a status
that triangulates the hierarchies of living and dying that are standardly deployed in
theorizations of biopolitics,” an exception to to the legal, ethical, and institutional frameworks that govern “making live, making die, letting live, or letting die.”174 (See: Disability,
Impairment, Normal)
Design
“The interaction of understanding and creation,” including but not limited to methodolo172. Aimi Hamraie and Kelly Fritsch, “Crip Technoscience Manifesto,” Catalyst: Feminism, Theory, Tech- noscience 5, no. 1 (April 1, 2019): 1, https://doi.org/10.28968/cftt.v5i1.29607.
173. Ann Millett-Gallant, “Disability + Visibility,” Art Papers (blog), Winter 2018/2019, https://www.
artpapers.org/glossary/glossary-disability-visibility/.
174. Jasbir K. Puar, The Right to Maim: Debility, Capacity, Disability, Anima (Duke University Press,
2017), 137.

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gies where design is a conscious strategy, also implicit in “how a society engenders inventions whose existence in turn alters that society.”175 (See: Sociotechnical)
Diagnosis (Dx)
The action of identifying patterns in an individual’s health status so as to assign categorical labels within agreed-on institutional systems. Diagnosis may take into account
the individual’s health history, test results and other measurements. (See: Data, History
(Hx), Information, Treatment (Tx))
Diffusion
Diffusion models, used in generative AI to produce realistic synthetic images and data,
destroy the structure of the original (what is recognizable about it) by adding noise, then
learn how to iteratively restore the original from the noise.176 (See: Compression, Composition, Coherent, Distortion, Noise, Variational Autoencoder (VAE))
Digital Biomarkers
As defined by the eponymous academic journal, Digital Biomarkers are “objective, quantifiable physiological and behavioral data that are collected and measured by means of
digital devices such as portables, wearables, implantables, or ingestibles. The data collected are typically used to explain, influence, and/or predict health-related outcomes.”177
Digital Phenotype
Patterns in data, correlated with health-related outcomes. (See: Data, Diagnosis, Digital
175. Terry Winograd and Fernando Flores, Understanding Computers and Cognition: A New Foundation
for Design (Boston: Addison-Wesley, 1986), 4.
176. Jonathan Ho, Ajay Jain, and Pieter Abbeel, “Denoising Diffusion Probabilistic Models” (arXiv,
December 16, 2020), http://arxiv.org/abs/2006.11239; Jascha Sohl-Dickstein et al., “Deep Unsupervised Learning Using Nonequilibrium Thermodynamics” (arXiv, November 18, 2015), http://arxiv.org/
abs/1503.03585.
177. “Digital Biomarkers,” Digital Biomarkers | Karger Publishers, accessed June 19, 2024, https://karger. com/dib.

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Biomarkers, Outcome)
Disability
Disability is an institutional category with social, legal and political consequences. It has
been theorized in medical (in terms of pathology and cure), social (in terms of constructed exclusions and social change), as well as political/relational terms (medicine is
political, social status is intersectional, embodied knowledge is valuable). Disability can
also be a part of a person’s identity. Allison Kafer writes: “ideas about disability [...]
animate many of our collective evocations of the future; in these imaginings, disability
too often serves as the agreed-upon limit of our projected futures.” As a function of social
imagination, it informs what we think is possible. Disability provides a legal and ethical framework for identifying aspects of the environment that exclude or impede people
with impairments, and to improve the contexts—legal, social, and architectural, etc—in
which disabled bodies and minds exist. While these frameworks overlap conceptually and
practically with those of illness—in that some illnesses may produce disability, and some
disabilities may produce illness—the two terms are not interchangeable. (See: Ableism,
Accessibility, Bodymind, Crip, Disability Justice, Illness, Imaginary, Impairment, Protected Attributes)
Disability Justice (DJ)
An organizing framework for exposing and challenging ableism and other forms of oppression that impact people with disabilities. Building on critical and legal concepts of
Disability Rights (self-determination, autonomy, inclusion, access to resources, support,
and opportunities to thrive), DJ places renewed focus on how disability intersects with
race, gender, sexuality, class, and other social identities.178 (See: Ableism, Accessibility,
Crip, Disability, Impairment)
178. Sins Invalid and Patty Berne, “10 Principles of Disability Justice,” Sins Invalid (blog), September 17,
2015, https://www.sinsinvalid.org/blog/10-principles-of-disability-justice.

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Discourse
Where thought is expressed in language, shaping a shared sense of what is appropriate,
normal, true, or possible. (See: Common Sense, Disidentification, Epistemology, Ideology,
Imaginary, Interpellation)
Disidentification
The productively ambiguous position of neither assimilating to, nor reacting against,
dominant patterns. (See: Common Sense, Discourse, Ideology, Imaginary, Interpellation)
Distortion
What happens when a thing is deformed past a threshold of recognizability or translation. In terms of signals, distortion is the process of progressively introducing harmonics,
adding complexity until the signal becomes indistinguishable from noise.
Easy Read
A way of writing that helps people to understand the main ideas more clearly. Easy read
uses short sentences and words, and also has a picture next to each sentence. The picture helps give more information about the words. (See: Accessibility, Information, Plain
Language)
Ecological
Having to do with the study of relationships, between humans, cultures, systems, processes, tools, and/or non-humans. (See: Clinic, Home, Environmental, In The Wild)
Electronic Health Records (EHR)
including laboratory and test results, lists of prescribed medications, vaccinations, and

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narrative reports written by clinicians (commonly referred to as “open notes”). These
records may be accessible to patients without mediation or interpretation
Embedding
A way of representing complex data in a simpler form, while preserving important properties and relationships. An image of a face is reduced to a collection of nodes and edges.
No dictionary definitions are explicitly learned, but a word is understood in the number
of times it appears in the vicinity of other words. A basic example is the task of representing a city—a highly complex entity—in terms of its latitude and longitude, two vectors that identify the city by where on the globe it is located. This may be all you need
to know about the city. Adding more details—population, country, yearly precipitation,
median income, and so on—builds a richer representation, while adding more dimensions
to the embedding space. AI models given the task of creating embeddings learn which
implicit patterns and relationships in the data are important to know, without need for
high fidelity representations of the individual items. (See: Artificial Intelligence, Compression, Large Language Model (LLM), Machine Learning, Variational Autoencoder (VAE),
Retrieval Augmented Generation (RAG))
Embodiment
Being in one’s skin. “the lived body as, at once, both an objective subject and a subjective object: a sentient, sensual, and sensible ensemble of materialized capacities and
agency that literally and figurally makes sense of, and to, both ourselves and others.”179
What Donna Haraway called, non-metaphorically, “significant prosthesis:”180 a vector of
meaningfulness that connects between flesh and environment. Occupying a coherent position, orientation, or accountability, and as such, having agential status in political, legal,
ontological and epistemological terms. (See: Coherent, Environment, Epistemology)
179. Vivian Carol Sobchack, Carnal Thoughts: Embodiment and Moving Image Culture (University of
California Press, 2004), 2.
180. Donna Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Par- tial Perspective,” Feminist Studies 14, no. 3 (1988): 575, https://doi.org/10.2307/3178066.

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Emplotment
Organizing a series of events into a narrative with a plot, giving it structure, coherence,
and causality. Used to contextualize events into meaningful totalities, and to give meaning to disparate sets of events. (See: Ideology, Hermeneutics, Explainability)
Endpoint
In research, as in clinical care, an endpoint is identified as significant and relevant information produced by processing raw data, or outcomes. (See: Data, Information, Outcome)
Environmental
In healthcare, environment refers to the interaction of external factors on a person’s
well-being and health outcomes. Environment may include physical, biological, social,
cultural, behavioral, political and regulatory factors. Environment may contain multiple
ecologies. (See: Clinic, Home, Ecological, Exposome, In The Wild)
Epistemology
How we know what is true, how we know anything at all. Ideas, changing and evolving,
about how knowing works, where it comes from, what it covers, and what it can and
can’t do. (See: Discourse, Ground Truth)
Explainability
In the context of artificial intelligence, a system can be said to be explainable if it includes methods to assist humans who interact with it to understand what automated
steps were taken to reach an outcome, even if the low-level mechanics of the solution are
inaccessible, as with deep learning models. Explainability often takes shape as a summary

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or high level overview of the processes and justifications used. (See: Artificial Intelligence,
Chain-of-thought (CoT), Deep Learning, Emplotment, Interpretability, Large Language
Model (LLM), Machine Learning, Model)
Exposome
A “comprehensive description of lifelong exposure history” that complements the genome,
encompassing internal processes (from gut flora to hormones), as well as both specific
and general external factors (pollution, climate, education, class, stress, and so on).181
(See: Anamnesis, Embodiment, Environmental, History (Hx), Life Writing)
Fairness
In the context of AI and machine learning, fairness means freedom from error when
measuring between protected attributes—the set of personal characteristics that are
protected from discrimination by law and cannot be used as the basis for decisions, such
as race, gender, disability status, and so on. (See: Accuracy, Automated Decision-Making
(ADM))
Generative AI
Simply, a kind of AI model that can make new data based on patterns and relationships
learned in its training data. (See: Artificial Intelligence (AI), Variational Autoencoder
(VAE)
Ground Truth
What is agreed to be stable and true, before any analysis or modeling takes place. The
actual, confirmed reality or facts regarding a specific situation, used as a comparison or
181. Christopher Paul Wild, “The Exposome: From Concept to Utility,” International Journal of Epidemi- ology 41, no. 1 (February 2012): 24, https://doi.org/10.1093/ije/dyr236.

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benchmark to show that models, analyses, and derived data are valid and accurate. (See:
Data, Discourse, Ideology, Model)
Health-related Quality of Life (HRQL)
An important measure of patient-centered outcomes. The key domains of HRQoL include
behavior (what you do), functional status (what you can do), symptoms and symptom
burden (how you feel and how it impacts what you can do).182
Hermeneutics
The study of interpretation. WIth applications from literary theory to ethnography, a set
of methods that prepare an observer from one tradition to understand or describe—but
not try to explain—the practices and languages of another, including gathering awareness
of what is taken for granted within the observers’ own tradition. (See: Incommensurability, Interpretability)
History (Hx)
In a healthcare context, History, abbreviated as Hx, is a record of information about a
person’s health both current and in the past. A person’s Hx records may include information about their allergies, illnesses, surgeries, immunizations, results of physical exams
and tests, medicines taken, as well as habits and behaviors. (See: Anamnesis)
Home
In the design of research studies (e.g. clinical trials), home refers to experimental settings
that are intended to capture more accurate data about subjects’ daily life than is possible in a clinic. A number of assumptions may be embedded in the notion of home, such
182. “Guidance for Industry on Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims” (U.S. Department of Health and Human Services, Food and Drug
Administration, December 2009), https://www.regulations.gov/docket/FDA-2006-D-0362.

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as assuming that subjects have access to a stable, consistent and safe environment where
they have the ability to engage with the research in a self-supervised way. (See: Clinic,
Ecological, Environmental, In The Wild)
Homotopy
In the context of generative AI, different samples taken from the same model’s latent
space share a homotopic relationship, in that each can be continuously deformed into the
other along the contours of the feature space. For example: a pair of homotopic images of
cats may be sampled from the latent space of a model trained on images of cats. By interpolating between the two images, a series of new images can be continuously sampled,
where the first image of a cat appears to change gradually into the second, without ever
presenting as either non-image or non-cat. It is likely that the latent space illuminated by
this model does not hold all possible cats, but everything it holds is likely to look like a
cat. This is evidence that the model has learned a stable, persistent representation of the
visual structure of cats. (See: Interpolation, Latent Space)
Hypomnemata
(also written as Hupomnemata) Ὑπομνήματα [notebooks]. Collected notes and reflections
“which must be reread from time to time so as to reactualize their contents,” alongside
and intertwined with practices of listening and self-reflection.
183 From Michel Foucault’s
study of Seneca’s rules for self-knowledge and self-care. (See: Imaginary, Life-Writing)
Ideology
Dominant patterns that apply coherence, as the influence of power through groups
and systems: “The imaginary relationship of individuals to their real conditions of exis183. Michel Foucault, “The Hermeneutics of the Subject,” in The Essential Works of Foucault, 1954-1984, ed. Paul Rabinow (New York: New Press, 1997), 101.

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tence.”184 (See: Common Sense, Discourse, Disidentification, Imaginary, Interpellation)
Illness
How a particular person experiences disease, condition, or symptoms, including the
collected effects on the person’s existence and identity such as biological, psychological,
social, and economic outcomes.185 (See: Disability, Health-Related Quality of Life)
Imagination
In part, imagination is simply “the specific ability to produce and to decode images,” as
media theorist Vilém Flusser put it.186 This can be further reduced to the realization of
mental images, in whatever modality (thinking of a word, sound, place, gesture, plan,
system, etc). This act can be solitary or collective. Imagination encompasses, as sociologist Ruha Benjamin lists: dreams, dreaming, ideas, ideology, stories, speculation, playing,
poetry, myths, visions, narratives. Benjamin notes the strong role of imagination in the
field of sociology, as “the capacity to link individuals’ personal problems with broader social processes.”187 Imagination is a line of flight, a fulcrum, a tool for both repair and new
creation. Writer Imani Perry situates imagination prior to practice: “Imagination doesn’t
erase nightmares, but it can repurpose them with an elaborate sense-making or troublemaking.”188 (See: Analysis, Apperception, Imaginary, Interpretability)
Imaginary
Imaginary concerns social articulations of what is possible: the many ways we express
what we can think, what we think might happen, and what we think can be done. Imaginary is not in opposition with notions of truth, it is part of how truth thrives. Imagi184. José Esteban Muñoz, Disidentifications: Queers of Color and the Performance of Politics, Cultural
Studies of the Americas, v. 2 (Minneapolis: University of Minnesota Press, 1999), 11.
185. G. Thomas Couser, “Illness,” in Keywords for Disability Studies, ed. Rachel Adams, Benjamin Reiss,
and David Serlin (New York University Press, 2015), 300.
186. Flusser, Towards a Philosophy of Photography, 83.
187. Ruha Benjamin, Imagination: A Manifesto, A Norton Short (W. W. Norton, 2024), vii.
188. Imani Perry, Breathe: A Letter to My Sons (Beacon Press, 2019), 69.

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naries are collective projections of a desirable and feasible future, per Ruha Benjamin’s
succinct definition. For poet and writer Édouard Glissant, each culture has its own particular imaginary which is expressed in “aIl the ways a culture has of perceiving and conceiving of the world.”189 Psychoanalyst Jacques Lacan placed the imaginary with clinical
specificity—as all that is available to the senses—alongside the symbolic (what language
can do) and the real (the unrepresentable aspects of reality). To be imagined is to be, as
Glissant puts it, “conceivable in transport of thought”190 . Sociotechnical Imaginaries, a
concept developed by Sheila Jasanoff and Sang-Hyun Kim among others, describes how
visions of scientific and technological progress carry with them implicit ideas about public purposes, collective futures, and the common good. (See: Common Sense, Discourse,
Ideology, Imagination, Latent Space)
Impairment
“A special kind of limit.”191 Having an impairment creates a re-routing of intention
through “a productive distortion of an ability.” where “The ability itself might be real or
imagined.”192 While Impairments have in the past been used pejoratively in both legal
and theoretical frameworks as the medical basis for social constructs of disability, impairments are clinical descriptors, and don’t necessarily imply disability in the broader social
or functional sense.193 (See: Crip, Disability, Distortion, Imaginary, Noise)
Incommensurable
Fundamentally different. A characteristic of two or more entities that cannot be compared because they do not share a common standard, point of reference, or measurement.
Incommensurability is a significant concept in mathematics, philosophy, and ethics: where
189. Edouard Glissant, Poetics of Relation, trans. Betsy Wing (University of Michigan Press, 1997), xxii.
190. Glissant, Poetics of Relation, 174.
191. Jonathan Sterne, Diminished Faculties: A Political Phenomenology of Impairment (Duke University
Press, 2021), 194.
192. Sterne, Diminished Faculties, 194.
193. Griet Roets and Rosi Braidotti, “Nomadology and Subjectivity: Deleuze, Guattari and Critical
Disability Studies,” in Disability and Social Theory, ed. Dan Goodley, Bill Hughes, and Lennard Davis
(Palgrave Macmillan UK, 2012), 161–78, https://doi.org/10.1057/9781137023001_10.

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translation is not possible, analysis is built on interpretation.
Inference
The action of predicting what is likely, based on evidence, ideas, methods, or analogies.
Inference is something both people and machines do. It is a natural way of thinking. It
has been formalized as the basis of both statistics and AI. Different kinds of inference
include: inductive (starting with evidence), deductive (starting with ideas), transductive
(connect inputs to outputs without generalizing), statistical (starting with evidence and
a set of methods), abductive (jumping between ideas and evidence by guesswork), or
analogical (finding similarities between different situations). (See: Abduction, Artificial
Intelligence (AI), Chain-of-thought (CoT), Model)
Information
“All instances where people interact with their environment in any such way that leaves
some impression on them [...] These impressions can include the emotional changes [and]
can also reflect complex interactions where information combines with preexisting knowledge to make new understandings.”194 To inform is to give form to something. Information is raw data that has been worked on: abstracted, annotated, analyzed, measured,
compared, tracked, interpreted, synthesized, modeled, represented, etc. (See: Data, Endpoint, Model, Noise, Signal)
Instrument
An instrument is an extension of a person’s senses and actions that reliably represents
their intentions, even as it adapts to new settings.
Interpellation
194. Marcia J Bates, “Information Behavior,” Encyclopedia of Library and Information Sciences 3 (2010):
2074.

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Interrupted, hailed, called, compelled to respond or self-identify in a particular way or
shape to a particular prompt. To make yourself into a pattern. (See: Discourse, Disidentification, Ideology, Imaginary)
Interpolation
In mathematical terms, placing a new point between two (or more, depending on dimensionality) discrete points, smoothing a curve. In musical terms, not a sample, not a cover,
but a quotation, like carrying a familiar tune). (See: Homotopy, Latent Space)
Interpretability
In the context of artificial intelligence, a model can be called interpretable if humans
interacting with the model can experience firsthand how input features influence the
output. An interpretable model’s inner mechanisms are understandable to humans. All
interpretable models are also explainable, in that the justification for outcomes can be
communicated; however, not all explainable models are interpretable, e.g. deep learning
models. (See: Artificial Intelligence, Chain-of-thought (CoT), Deep Learning, Explainability, Hermeneutics, Model)
Intersubjectivity
A shared understanding; a concept that emphasizes the way perceptions, experiences,
and interpretations are shaped by interactions with others. Intersubjectivity is invoked
in situations where personal experience, even sense of self, is co-created by interactions
within social contexts and dynamics. (See: Common Sense, Discourse)
Intervention
Any action taken to relieve the burden of disease, or to improve a patient’s health status.
Interventions may refer to medical procedures, preventive measures, therapeutic treat-

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ment, behavioral modification, and/or diagnostic tests. (See: Minimal Clinically Important Difference (MCID), Patient-Reported Outcomes (PROs), Patient-Reported Outcome
Measures (PROMs), Treatment (Tx))
Large language model (LLM)
A generative AI model, typically with billions or trillions of parameters, that has been
trained on excessively large amounts of text or multimodal data in order to perform natural language tasks, including understanding and generating human-like language. (See:
Generative AI, Latent Space, Retrieval Augmented Generation (RAG))
Latent Space
A compressed representation capturing the underlying structure and patterns of some
original data as embeddings. The spatial relation between embeddings in latent space can
provide insight into how different samples are related in terms of their features, both
explicit and implicit. In generative AI, a model learns to encode data into latent space,
then generate new data by sampling from the latent space. New data sampled from the
latent space will be unique, but will maintain a coherent representation of the patterns
or features of the original data. Manipulating or coordinating between different latent
spaces is key to the functionality of large language models, multimodal modals, and
translation models, among others. (See: Compression, Data, Embedding, Generative AI,
Homotopy, Interpolation, Manifold, Variational Autoencoder (VAE))
Life-Writing
Life-writing covers “everything from the complete life to the day-in-the-life, from the
fictional to the factional. It embraces the lives of objects and institutions as well as the
lives of individuals, families and groups. Life-writing includes biography, autobiography, memoirs, letters, diaries, journals, anthropological data, oral testimony, eye-witness
accounts, biopics, plays and musical performances, obituaries, scandal sheets, and gossip

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columns, blogs, and social media.”195 (See: Exposome, Hypomnemata, Narrative Medicine, Patient-Generated Health Data (PGHD))
Linguistic validation
Adjusting for how changes in language produce new patterns in data.
Longitudinal
Describes data sampled at periodic intervals over a timespan (See: Data, Momentary,
Retrospective, Sampling)
Machine Learning
A subset of artificial intelligence that describes a range of algorithmic approaches to
learning from data. Learning, in the context of machine learning, means: given a set of
data, a task to be performed on the data, and a measure of how well the task has been
performed, perform the task well on both the original (i.e. ‘training’) data and new (previously unseen) data. In practice, this means creating a model of patterns and relationships in the original data, identifying a ground truth for how the model should perform
the task, and adjusting the model’s parameters to minimize errors on the original data
while maintaining the capacity to generalize to new data. (See: Artificial Intelligence
(AI), Data, Model, Performance)
Manifold
A kind of model that generalizes mathematical ideas about space. A manifold can be any
number of dimensions: for instance, a curve is a one-dimensional manifold, and a surface
is a two-dimensional manifold. Latent space, as the projection of learned feature repre195. “What Is Life-Writing?,” Oxford Centre for Life-Writing, accessed June 17, 2024, https://oclw.web. ox.ac.uk/what-life-writing.

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sentations in many AI models, is a many-dimensional manifold of as many dimensions as
the representation holds. (See: Homotopy, Latent Space, Model, Topos)
Minimal Clinically Important Difference (MCID)
The threshold at which a change in one’s health becomes meaningful. Find by asking
the patient: would you consider repeating this intervention if you had the choice to make
again?196 (See: Intervention, Patient-Reported Outcomes (PROs), Patient-Reported Outcome Measures (PROMs))
Model
An abstract representation that tries to capture what is meaningful about a thing. (See:
Compression, Homotopy, Latent space, Manifold, Sampling)
Momentary
In the context of research, a momentary context refers to a brief window of time in which
interventions happen, tests or measurements are conducted, or reports are solicited: i.e.
in the moment. (See: Longitudinal, Retrospective, Sampling)
Multimodal
In the context of AI, learning relationships between different representational modes such
as image, sound, text, video, and so on. (See: Artificial Intelligence (AI), Model)
Narrative Medicine
Understanding health in the context of life. (See: Anamnesis, Emplotment, Exposome,
196. Anne G. Copay et al., “Understanding the Minimum Clinically Important Difference: A Review of
Concepts and Methods,” The Spine Journal 7, no. 5 (September 2007): 542, https://doi.org/10.1016/j.
spinee.2007.01.008.

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History (Hx), Hypomnemata, Life-Writing, Patient-Generated Health Data (PGHD))
Natural Language Processing (NLP)
How computers come to understand what humans mean, as when people use language to
express themselves to one another. (See: Artificial Intelligence, Chain-of-thought (CoT))
Neurodivergent
Of an individual’s particular experience with non-normative affective or cognitive processes.
Neurodiversity
A representation of the given (“actual” in Deleuzean terms) spectrum of non-normative
affective or cognitive processes.
Noise
Used in distinction to signal (as a desirable source of information)—as excess, impairment, background, mask. Qualitatively, noise is a way of locating meaningful difference
that is affective, non-representational and non-discursive. (See: Discourse, Distortion,
Impairment, Incommensurable, Information, Non-Representational, Signal)
Normal
The force of coherence to dominant patterns. For philosopher and historian of science
Georges Canguilhem, normal, in the context of health and illness, is the way an organism
adapts and remains the same, maintaining stability in response to its changing environment. In this usage, normal is not fixed or static, it is a dynamic process of adjusting and
regulating, where internal and external factors combine to shape what’s normal. (See:

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Common Sense, Discourse, Ideology, Interpellation, Model, Non-Representational)
Non-Representational
Non-representational research emphasizes lived experiences, interactions, and affective
dimensions that traditional representational methods often overlook. Drawing from
post-structural and post-humanist thought, it challenges stable identities, hierarchies,
and boundaries, highlighting the fluid, contingent, constructed, and relational nature of
social and material phenomena. Non-representational methods are often performative or
collaborative, prioritizing embodied, sensory, and relational experiences in shaping knowledge and understanding.(See: Chain-of-thought (CoT), Disidentification, Model, Normal)
Outcome
In research as in clinical care, an outcome is a variable being measured, such as a particular survey score, or lab result. It is data captured by means of an instrument (anything
from a writing prompt to a medical device); it can be structured or unstructured, qualitative or quantitative. (See: Data, Endpoint, Instrument)
Overhealing
Scar tissue, etc
Pain
“An unpleasant sensory and emotional experience associated with, or resembling that
associated with, actual or potential tissue damage.”197
Parataxis
197. Srinivasa N. Raja et al., “The Revised IASP Definition of Pain: Concepts, Challenges, and Compro- mises,” Pain 161, no. 9 (September 1, 2020): 2, https://doi.org/10.1097/j.pain.0000000000001939.

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Producing poetic insight by placing things side by side
Pathography
Writing about illness (See: Anamnesis, Emplotment, Life-Writing)
Patient Advocacy
Representing the interests and rights of patients on individual, community, or systemic
scales. Advocacy includes making sure patients’ needs are met, from access to care to
education, decision-making, and ethics. (See: Patient-centered care (PCC))
Patient-Centered Care (PCC)
A practical ethics of empowering patients to become active participants in their own
care, emphasizing the importance of understanding patients’ perspectives and values,
involving them in decision-making, and offering tailored approaches that suit individual
patient’s needs. (See: Minimal Clinically Important Difference (MCID), Patient Advocacy, Translational Medicine)
Patient-Generated Health Data (PGHD)
Health-related data (e.g., health history, device data, and patient-reported outcomes
(PROs) that are created, recorded, or gathered by or from patients, family members, or
other caregivers to help address a health concern or promote health. The use of PGHD
offers a unique opportunity to fill in gaps in information and provide a more comprehensive picture of ongoing patient health for use during care, resulting in potential cost
savings and improvements in health care quality and outcomes, care coordination, and

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patient safety.198
Patient-Reported Experience Measures (PREMs)
A kind of Patient-Reported Outcome Measure (PROM), PREMs are focused on the
quality of a patient’s experience in terms of the health services they receive, their interaction with the health care providers or automated health systems and tools. PREMs
often take the form of a satisfaction questionnaire. (See: Patient-Centered Care (PCC),
Patient-Reported Outcome Measures (PROMs))
Patient-Reported Outcomes (PROs)
Patient-Reported Outcomes are timely records of a patient’s experience of illness—their
inner thoughts, bodily sensations, and social experience. PROs are raw data coming
directly from the patient, without interpretation of the patient’s response by a clinician
or anyone else. PROs are one kind of Patient-Generated Health Data (PGHD). (See:
Apperception, Endpoint, Intervention, Minimal Clinically Important Difference (MCID),
Outcome, Patient-Generated Health Data (PGHD), Patient-Reported Outcome Measures
(PROMs), Self-report)
Patient-Reported Outcome Measures (PROMs)
A PROM is a standardized tool: a survey, instrument, scale, or single-item measure used
to assess particular PROs, such as symptoms, behaviors, or functional abilities, as perceived by the individual, obtained by directly asking the individual to self-report. (See:
Endpoint, Intervention, Minimal Clinically Important Difference (MCID), Outcome,
Patient-Reported Outcomes (PROs))
198. “Conceptualizing a Data Infrastructure for the Capture and Use of Patient-Generated Health Data,”
U.S. Department of Health and Human Services, Office for the Assistant Secretary for Planning and Evaluation, accessed June 10, 2024, https://aspe.hhs.gov/conceptualizing-data-infrastructure-capture-use-pa- tient-generated-health-data.

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Phenomenology
The study of what makes experience and action possible. (See: Apperception, Study)
Plain language
Plain language is a way of writing that is more accessible. It uses smaller words and
shorter sentences. This helps people (with intellectual and developmental difficulties,
English language learners, etc.) to understand the main ideas more clearly. (See: Accessibility, Accommodation, Easy Read)
Poetics
The makingness of things and events; the “revelatory distillation of experience” that gives
names and shapes to ideas and imaginaries, so they can be thought.199 (See: Hermeneutics, Imaginary, Interpretability)
Precision
How close multiple predictions are to each other—consistency and exactness. (See: Accuracy)
Predictive Decision Support Intervention (DSI)
“Technology intended to support decision-making based on algorithms or models that
derive relationships from training or example data and then are used to produce an output or outputs related to, but not limited to, prediction, classification, recommendation,
evaluation, or analysis” (89 FR 1192)(See: Analysis, Automated Decision Making (ADM),
Model)
199. Lorde, “Poetry Is Not a Luxury,” 45.

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Prompt Engineering
Prompt Engineering concerns how to use language to effectively interact with a model
of language, including mapping out sequences and selecting contexts, prior knowledge,
and response templates. Prompt engineering can also contribute to test-time training by
providing a response template with novel examples to fine-tune the model. (See: Chainof-thought (CoT), Large Language Models (LLMs), Retrieval Augmented Generation
(RAG))
Quality of Life (QoL)
(See: Health-Related Quality of Life (HRQL))
Realist Synthesis
A method for the systematic review of research that shows the influence of context on
research outcomes: “What works for whom under what circumstances, how and why?”200
(See: Abduction, Research, Study, Theory)
Real-Time
The temporality of automation: a continuously unfolding present, an anticipated future.
(See: Anticipation, Momentary, Temporality)
Real-World
Also referred to as ‘In the wild’ or ‘naturalistic’, Real-World refers to everyday activities
and spaces, as well as actual experiences, environments, and populations. Real-World is
understood as an external basis for abstractions, theories, concepts, or simulations. In
200. Geoff Wong et al., “RAMESES Publication Standards: Realist Syntheses,” BMC Medicine 11, no. 1
(January 29, 2013): 21, https://doi.org/10.1186/1741-7015-11-21.

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clinical trials, a Real-World Setting or Environment refers to the design of studies conducted in everyday life situations. By placing the research outside of controlled laboratory or clinical settings, the aim is to capture a more authentic range of behaviors and
outcomes. (See: Clinic, Home, Environment, Research, Reworlding, Simulation, Topos,
Translational Medicine)
Research
Systematic investigation, designed to develop or contribute to generalizable knowledge.201
(See: Study, Synthesis)
Resonance
“A sympathetic vibration or ‘the condition in which an oscillating or periodic force acting
on an object or system has a frequency close to that of a natural vibration of the object.’
One system acts upon another near it spatially or akin to it vibrationally. It is the physical, social, linguistic, and psychological fact of the more than one.”202 (See: Attunement)
Retrieval Augmented Generation (RAG)
A natural language processing (NLP) technique used by AI models which combines retrieval with generation. RAG-enabled AI models are able to generate responses to queries
based on specific contextual material provided to the model. (See: Embedding, Large
Language Model (LLM), Natural Language Processing (NLP), Prompt Engineering)
Retrospective
Looking backward, as in recalling a memory, or analyzing data sampled during past
201. “45 CFR Part 46 -- Protection of Human Subjects,” accessed April 29, 2024, https://www.ecfr.gov/
current/title-45/part-46.
202. Julie Beth Napolin, The Fact of Resonance: Modernist Acoustics and Narrative Form (Fordham Uni- versity Press, 2020).

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events. (See: Longitudinal, Momentary, Sampling, Soundscape, Temporality)
Reworlding
To introduce something that has been abstracted or compiled into a complex, real-world
environment, for the purposes of re-sampling the signal, mixed with resonant traces of
the new environment, the tools, and the processes used. (See: Environment, Real-World,
Resonance, Sampling, Signal, Transduction)
Sampling
Taking a small amount of something to make generalizations about that thing. This can
refer to signals, populations, observations, processes, etc. As with any representation,
there is loss—choice of sample type and size, as well as identifying what features and
relationships are meaningful are crucial aspects of sampling. (See: Compression, Data,
Longitudinal, Momentary, Retrospective, Temporality)
Self-report
A kind of research tool used across science, medicine, and marketing research: questions
people answer about themselves in order to communicate thoughts, feelings, attitudes,
symptoms and behaviors related to one’s own direct experience. (See: Apperception,
Life-Writing, Patient-Generated Health Data (PGHD), Patient-Reported Outcomes
(PROs), Sampling)
Signal
Where attention is directed, what calls out. (See: Attention, Data, Distortion, Information, Noise, Sampling)
Simulation

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Simulations are “the real-world activations of data to calculate and predict future action
and movement: how a star will explode, how a hurricane will move. They are both literal
products of equations that describe what actions can happen inside of a virtual world,
and potent metaphors for future-casting.” simulations are unreal worlds that produce real
actions: “We simulate when we imagine ourselves and others in the future, and we base
our current actions on that mental simulation.”203 (See: Data, Real-World, Reworlding)
Sociotechnical
A way of describing systems, designs, attitudes, and imaginaries that emphasizes the
ways development of technology is socially determined and society is shaped by technical
artifacts. Each makes the other. (See: Technoscience)
Software as a medical device (SaMD)
“Software intended to be used for one or more medical purposes that perform these
purposes without being part of a hardware medical device.”204 (See: Application Programming Interface (API), Instrument)
203. Nora N. Khan, Seeing, Naming, Knowing (The Brooklyn Rail, 2019), 16, https://brooklynrail.
org/2019/03/art/Seeing-Naming-Knowing.
204. IMDRF SaMD Working Group, “Software as a Medical Device (SaMD): Key Definitions” (International Medical Device Regulators Forum, December 9, 2013), https://www.imdrf.org/sites/default/files/ docs/imdrf/final/technical/imdrf-tech-131209-samd-key-definitions-140901.pdf.

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Soundscape
A transformational arrangement of the field of listening. In sound artists and organizers
Ultra-red’s use of the term, the soundscape as a mutable object for collective inquiry. Silence is a precondition for a soundscape to become apparent, either through listening, as
a disciplined and political act of deference, or noise-canceling, as a methodological frame
found in the idealist fields of acoustic ecology and later, sonic materialism. In Ultra-red’s
methodology of Militant Sound Investigation, the soundscape is accessed with the aid
of technological instruments, with the “capacity to recall the investigators to silence”
to “correct the tendency to fixate on demands that do not resonate with the curiosity,
friendship, love” that hold the collective effort together.205 (See: Attunement, Composition, Incommensurable, Instrument, Noise, Retrospective, Sampling, Silence, Study,
Topos)
Study
Study has both formal and informal uses: as a research process following a protocol and
agreed-on best practices within a particular discipline, such as with a clinical trial; study
can also be used more informally to refer to co-learning, or communal engagement with a
subject of shared interest. I like the way Fred Moten and Stefano Harney keep the term
in circulation: “study is what you do with other people. It’s talking and walking around
with other people, working, dancing, suffering, some irreducible convergence of all three,
held under the name of speculative practice. The notion of a rehearsal—being in a kind
of workshop, playing in a band, in a jam session, or old men sitting on a porch, or people working together in a factory—there are these various modes of activity. The point
of calling it ‘study’ is to mark that the incessant and irreversible intellectuality of these
activities is already present. These activities aren’t ennobled by the fact that we now say,
“oh, if you did these things in a certain way, you could be said to have been studying.”
To do these things is to be involved in a kind of common intellectual practice. What’s
205. Ultra-red, 10 Preliminary Theses On Militant Sound Investigation, (Printed Matter, 2008), 3.

305
important is to recognize that that has been the case – because that recognition allows
you to access a whole, varied, alternative history of thought.”206
Synthesis
A generative and unfixed process of assembling or bringing together in a mixture. As the
inverse of analysis, synthesis activates imaginaries, tracing lines of relation to “unpack the
context/mechanism/outcome relationship.”207 As a listening strategy, synthesis provides a
momentary opportunity to check for shared understanding, to correct misunderstanding,
to demonstrate that narratives have been heard and interpretation is in progress. Synthesis is difference: in the midst of collapsing, mutating, deterritorializing into something
else. (See: Analysis, Imaginary, Momentary, Theory)
Temporality
The state of existing within, or having a relationship to, time. Ability, gender, culture,
sexuality, class, race, age, immigration status, etc. all contribute to the configuration of
widely differing and specific temporalities, manifest through individual and collective
experience of interruptions and reconfigurations, deferred or uncertain futures, as well
as understandings of memory, inheritance and legacy. Temporalities are subject to distortions through processes of normalization. (See: Anamnesis, Anticipation, Distortion,
Exposome, History (Hx), Longitudinal, Momentary, Retrospective)
Texture
How a thing feels: the attributes of surface and structure as they appear in a consistent
way to the senses.
Topos
206. Stefano Harney and Fred Moten, The Undercommons: Fugitive Planning & Black Study (Minor Compositions, 2013), 110.
207. Wong et al., “RAMESES Publication Standards: Realist Syntheses,” 21.

306
Τόπος [place], as in: a place to find something, a landscape. The features and locality of
a space—affective, cultural, demographic, epistemological, geographic, linguistic, logical,
social, technological, etc. A theme, topic, or set: a way of laying out categories to understand relationships or make decisions. (See: Affect, Epistemology, Manifold, Texture)
Transformer
A type of AI model architecture that is popularly used for natural language processing
and related tasks. Transformers encode position (for sequential data, such as text) and
perform self-attention, weighing the relative importance of different fragments of data
(tokens) to capture what is meaningful over large stretches of data.208 (See: Artificial Intelligence (AI), Attention, Embedding, Large language model (LLM), Machine Learning,
Natural Language Processing (NLP), Variation Autoencoder (VAE))
Transcoding
Moving a representation between models, such as between higher and lower dimensions
or resolutions. (See: Compression, Data, Information, Model, Sampling)
Transduction
A carrying, or leading, across. A signal or impulse moving from one medium into another, like a voice on a phone, or cream stirred in milk. In biological terms, “the conversion
of signals from the environment outside of a cell into physical or chemical changes within
the cell” (Sharma).209 In terms of reasoning, transduction predicts outcomes for specific
inputs directly from observations, without creating general rules for all cases. (See: Affect, Chain-of-thought (CoT), Diffraction, Signal, Translation)
208. Ashish Vaswani et al., “Attention Is All You Need,” arXiv:1706.03762 [Cs], December 5, 2017, http://
arxiv.org/abs/1706.03762.
209. Kriti Sharma, Interdependence: Biology and Beyond, Meaning Systems (Fordham University Press,
2015), 3.

307
Translation
Converting something from one form or domain to another, such as between languages.
Translation captures and conveys nuanced meaning and context from the original so that
it can be understood in its new domain. (See: Transduction, Interpolation, Interpretability, Transcoding, Sampling)
Translational Medicine
Multidisciplinary approach to connecting basic laboratory research with real-world applications, translating findings from research into therapies, tools, and better patient experiences. (See: Patient-Centered Care (PCC), Real-World, Research, Reworlding)
Treatment (Tx)
Interventions involved in the management and care of a patient’s health. Healthcare
providers deciding on approaches to treatment may consider diagnosis, patients’ needs,
clinical outcomes, and value. (See: Diagnosis (Dx), Minimum Clinically Important Difference (MCID), Patient-Centered Care, Value-Based Care)
Uncomputable
Problems are uncomputable (or undecidable) where they can’t be solved with a definitive
‘yes’ or ‘no’ answer. Although this ‘undecidability’ can be for logical or abstract reasons,
it is a matter of limits. In this light, problems are “effectively” undecidable where they
require more energy or attention than are available to the solvers of the problem.
Value-Based Care
Framework for structuring healthcare systems (delivery, payment, management, etc)

308
around value for patients, defined as positive health outcomes per unit of cost.210
Variational Autoencoder (VAE)
A machine learning technique that is central to many generative AI systems. An autoencoder learns how best to compress something, that is, represent some original version
of a thing in the simplest possible way, such that it can be re-made (decompressed) as
a near-identical proxy. A variational autoencoder, by extension, provides access to the
model to make adjustments at the compressed level (in its latent space of representation),
producing variations on the original that maintain its key features and internal relationships. (See: Compression, Latent Space, Large Language Model (LLM), Machine Learning)
Waste
In summing up the stuff of cancer treatment (self-help books, prosthetics, wigs, nutritional supplements, unused medication, etc.), anthropologist Lochlann Jain puts the waste of
disease in contrast with its data—where the latter is “lifted out” of a person to shape a
clinical representation of them, the former, as a mess of odds and ends, reveals the work
of pulling together weakly normalized, social persons. Jain draws on Mary Douglas’s definition of dirt as “‘matter out of place,’ or the stuff that does not fit within categories.”211
A generation earlier, Douglas had written: “Where there is dirt there is system. Dirt is
the by-product of a systematic ordering and classification of matter, in so far as ordering
involves rejecting inappropriate elements.” Waste, unlike its cleanly abstracted counterpart data, implies both “a set of ordered relations and a contravention of that order.”212
210. “Value-Based Care,” Centers for Medicare & Medicaid Services, accessed March 12, 2024, https://
www.cms.gov/priorities/innovation/key-concepts/value-based-care.
211. Sarah S. Lochlann Jain, Malignant: How Cancer Becomes Us (University of California Press, 2013),
204.
212. Mary Douglas, Purity and Danger: An Analysis of the Concepts of Pollution and Taboo, Repr (Rout- ledge, 2002), 36.

309
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APPENDIX A: THE VALIDATED INSTRUMENTS (SOURCES)
APPENDICES

338
Item Author Title Year Publication Title DOI
1
Alge, Olivia; Reza Soroushmehr, S. M.;
Gryak, Jonathan; Kratz, Anna; Najarian,
Kayvan
Predicting Poor Sleep Quality in Fibromyalgia
with Wrist Sensors 2020
2020 42nd
Annual
International
Conference of
the IEEE
Engineering in
Medicine &
Biology Society
(EMBC)
10.1109
/EMBC441
09.
2020.9176
386
2
Ebrahimi, Ali; Wiil, Uffe Kock; Andersen,
Kjeld; Mansourvar, Marjan; Nielsen, Anette
Sogaard
A Predictive Machine Learning Model to
Determine Alcohol Use Disorder 2020
2020 IEEE
Symposium on
Computers and
Communication
s (ISCC)
10.1109
/ISCC5000
0.
2020.9219
685
3
Huang, JinMing; Xiao, Liang; Yang, Junyi;
Chen, SiMing
Using knowledge Graphs to Enhance the
Interpretability of Clinical Decision Support
Model 2020
2020
International
Conference on
Computer
Science and
Management
Technology
(ICCSMT)
10.1109
/ICCSMT5
1754.
2020.0003
0
4
Zhang, Bo; Buendia, Ruben; Iannoti,
Nicholas; Ramsden, Emma; O'Regan, Paul;
Swift, Jason; Lockwood, Sarah; Jackson,
David J.; Dennis, Glynn; Hagger, Lynn;
Havsol, Jesper
Home-based Digital Assessments with Applied
Sentiment & Emotion AI Capture Improved
Quality-of-life in Asthma Patients 2021
2021 43rd
Annual
International
Conference of
the IEEE
Engineering in
Medicine &
Biology Society
(EMBC)
10.1109
/EMBC461
64.
2021.9629
985
5 Lisowska, Aneta; Wilk, Szymon; Peleg, Mor
Is it a good time to survey you? Cognitive load
classification from blood volume pulse 2021
2021 IEEE 34th
International
Symposium on
ComputerBased Medical
Systems
(CBMS)
10.1109
/CBMS520
27.
2021.0006
1
6
Ranasinghe, Sajani; Gamage, Gihan;
Moraliyage, Harsha; Mills, Nishan;
McCaffrey, Nikki; Bucholc, Jessica; Lane,
Katherine; Cahill, Angela; White, Victoria;
De Silva, Daswin
An Artificial Intelligence Framework for the
Detection of Emotion Transitions in Telehealth
Services 2022
2022 15th
International
Conference on
Human System
Interaction (HSI)
10.1109
/HSI55341
.
2022.9869
503
7
Shah-Mohammadi, Fatemeh; Cui, Wanting;
Bachi, Keren; Hurd, Yasmin; Finkelstein,
Joseph
Using Natural Language Processing of Clinical
Notes to Predict Outcomes of Opioid Treatment
Program 2022
2022 44th
Annual
International
Conference of
the IEEE
Engineering in
Medicine &
Biology Society
(EMBC)
10.1109
/EMBC482
29.
2022.9871
960
8
Chen, Chih-Hsing; Liu, Kai-Chun; Lu, TingYang; Chang, Chih-Ya; Chan, Chia-Tai;
Tsao, Yu
Wearable-based Pain Assessment in Patients
with Adhesive Capsulitis Using Machine
Learning 2023
2023 11th
International
IEEE/EMBS
Conference on
Neural
Engineering
(NER)
10.1109
/NER5242
1.
2023.1012
3790
9
Hinchliffe, Chloe; Rehman, Rana Zia Ur;
Branco, Diogo; Jackson, Dan; Ahmaniemi,
Teemu; Guerreiro, Tiago; Chatterjee,
Meenakshi; Manyakov, Nikolay V.; Pandis,
Ioannis; Davies, Kristen; Macrae, Victoria;
Aufenberg, Svenja; Paulides, Emma;
Hildesheim, Hanna; Kudelka, Jennifer;
Emmert, Kirsten; Van Gassen, Geert;
Rochester, Lynn; Van Der Woude, C.
Janneke; Reilmann, Ralf; Maetzler, Walter;
Ng, Wan-Fai; Del Din, Silvia
Identification of Fatigue and Sleepiness in
Immune and Neurodegenerative Disorders
from Measures of Real-World Gait Variability 2023
2023 45th
Annual
International
Conference of
the IEEE
Engineering in
Medicine &
Biology Society
(EMBC)
10.1109
/EMBC407
87.
2023.1033
9956

339
Item Author Title Year Publication Title DOI
10
Wibowo, Sandi; Chaw, Wei Liang; Antuvan,
Chris Wilson; Hao, Chen
Use of Wearable Sensor Device and Mobile
Application for Objective Assessment of Pain in
Post-surgical Patients: A Preliminary Study 2023
2023 45th
Annual
International
Conference of
the IEEE
Engineering in
Medicine &
Biology Society
(EMBC)
10.1109
/EMBC407
87.
2023.1034
0199
11
Nichols, Christopher; Crane, H. Trask;
Ewart, Dave; Inan, Omer T.
Combining Knee Acoustic Emissions, PatientReported Measures, and Machine Learning to
Assess Osteoarthritis Severity 2023
2023 IEEE 19th
International
Conference on
Body Sensor
Networks (BSN)
10.1109
/BSN5848
5.
2023.1033
1381
12
Nnamdi, Micky C.; Shi, Wenqi; Tamo, J.
Ben; Iwinski, Henry J.; Wattenbarger, J.
Michael; Wang, May D.
Concept Bottleneck Model for Adolescent
Idiopathic Scoliosis Patient Reported Outcomes
Prediction 2023
2023 IEEE
EMBS
International
Conference on
Biomedical and
Health
Informatics
(BHI)
10.1109
/BHI58575
.
2023.1031
3382
13
Tramontano, Adriano; Feoli, Chiara;
Tamburis, Oscar; Conson, Manuel; Salzano,
Francesco; Magliulo, Mario
Deploying Unsupervised Learning for Daily
Activity Windows Analysis in Cancer Patients 2023
2023 IEEE
International
Conference on
Metrology for
eXtended
Reality, Artificial
Intelligence and
Neural
Engineering
(MetroXRAINE)
10.1109
/MetroXRA
INE58569.
2023.1040
5824
14
Dubey, Krati; Esnaashariyeh, Ali; Nahak,
Kirti; Hodade, Dipali Nagnath; Shrivastava,
Kapil; Jorvekar, Ganesh
Optimizing Healthcare Operations With Big
Data and AI 2023
2023
International
Conference on
Artificial
Intelligence for
Innovations in
Healthcare
Industries
(ICAIIHI)
10.1109
/ICAIIHI57
871.
2023.1048
9119
15
Wang, Yaohua; Canahuate, Guadalupe M;
Van Dijk, Lisanne V; Mohamed, Abdallah S.
R.; Fuller, Clifton David; Zhang, Xinhua;
Marai, Georgeta-Elisabeta
Predicting late symptoms of head and neck
cancer treatment using LSTM and patient
reported outcomes 2021
25th
International
Database
Engineering &
Applications
Symposium
10.1145
/3472163.
3472177
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Khanam, Asra; Masoodi, Faheem Syeed;
Bamhdi, Alwi
From data to insights: Leveraging machine
learning for diabetes management 2024
A Biologist's
Guide to
Artificial
Intelligence
10.1016
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443-
24001-
0.00007-5
17
Curtis, Jeffrey R.; Su, Yujie; Black, Shawn;
Xu, Stephen; Langholff, Wayne; Bingham,
Clifton O.; Kafka, Shelly; Xie, Fenglong
Machine Learning Applied to Patient‐Reported
Outcomes to Classify Physician‐Derived
Measures of Rheumatoid Arthritis Disease
Activity 2022
ACR Open
Rheumatology
10.1002
/acr2.
11499
18
De Jonge, Manon; Wubben, Nina; Van
Kaam, Christiaan R.; Frenzel, Tim;
Hoedemaekers, Cornelia W. E.; Ambrogioni,
Luca; Van Der Hoeven, Johannes G.; Van
Den Boogaard, Mark; Zegers, Marieke
Optimizing an existing prediction model for
quality of life one‐year post‐intensive care unit:
An exploratory analysis 2022
Acta
Anaesthesiologi
ca Scandinavica
10.1111
/aas.14138
19
Barak-Levitt, Jen; Held, Ron; Synett, Yossi;
Kremer, Noa; Hodak, Emmilia; Sherman,
Shany
Hidradenitis Suppurativa International Online
Community: Patient Characteristics and a
Novel Model of Treatment Effectiveness 2022
Acta DermatoVenereologica
10.2340
/actadv.
v102.1056
20
Groot, Olivier Q.; Bongers, Michiel E. R.;
Karhade, Aditya V.; Kapoor, Neal D.; Fenn,
Brian P.; Kim, Jason; Verlaan, J. J.;
Schwab, Joseph H.
Natural language processing for automated
quantification of bone metastases reported in
free-text bone scintigraphy reports 2020 Acta Oncologica
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2020.1819
563

340
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Reine, Seth; Archer, Holden;
Alshaikhsalama, Ahmed; Wells, Joel E;
Kohli, Ajay; Vazquez, Louis; Hummer, Allan;
D. Difranco, Matthew; Ljuhar, Richard; Xi,
Yin; Chhabra, Avneesh
Deep Learning-Generated Radiographic Hip
Dysplasia Parameters: Relationship to
Postoperative Patient-Reported Outcome
Measures 2022
Advances in
Artificial
Intelligence and
Machine
Learning
10.54364
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2022.1137
22
Szczepanowski, Remigiusz; Uchmanowicz,
Izabella; Pasieczna, Aleksandra H.;
Sobecki, Janusz; Katarzyniak, Radoslaw;
Kołaczek, Grzegorz; Lorkiewicz, Wojciech;
Kędras, Maja; Dixit, Anant; Biegus, Jan;
Wleklik, Marta; Gobbens, Robbert J.J.; Hill,
Loreena; Jaarsma, Tiny; Hussain, Amir;
Barbagallo, Mario; Veronese, Nicola;
Morabito, Francesco C.; Kahsin, Aleksander
Application of machine learning in predicting
frailty syndrome in patients with heart failure 2024
Advances in
Clinical and
Experimental
Medicine
10.17219
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040
23 Couto, Francisco M.; Krallinger, Martin
Proposal of the First International Workshop on
Semantic Indexing and Information Retrieval for
Health from Heterogeneous Content Types and
Languages (SIIRH) 2020
Advances in
Information
Retrieval
10.1007
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030-
45442-
5_87
24
Frederiksen, Bill Aplin; Schousboe, Maja;
Terslev, Lene; Iversen, Nikolaj; Lindegaard,
Hanne; Savarimuthu, Thiusius Rajeeth;
Just, Søren Andreas
Ultrasound joint examination by an automated
system versus by a rheumatologist: from a
patient perspective 2022
Advances in
Rheumatology
10.1186
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022-
00263-2
25
Atiyeh, Bishara; Emsieh, Saif; Hakim,
Christopher; Chalhoub, Rawad
A Narrative Review of Artificial Intelligence (AI)
for Objective Assessment of Aesthetic
Endpoints in Plastic Surgery 2023
Aesthetic Plastic
Surgery
10.1007
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023-
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26
Gibstein, Alexander R; Chen, Kevin;
Nakfoor, Bruce; Lu, Stephen M; Cheng,
Roger; Thorne, Charles H; Bradley, James
P
Facelift Surgery Turns Back the Clock: Artificial
Intelligence and Patient Satisfaction Quantitate
Value of Procedure Type and Specific
Techniques 2021
Aesthetic
Surgery Journal
10.1093
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8
27
Abi-Rafeh, Jad; Henry, Nader; Xu, Hong
Hao; Bassiri-Tehrani, Brian; Arezki, Adel;
Kazan, Roy; Gilardino, Mirko S; Nahai, Foad
Utility and Comparative Performance of Current
Artificial Intelligence Large Language Models
as Postoperative Medical Support Chatbots in
Aesthetic Surgery 2024
Aesthetic
Surgery Journal
10.1093
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5
28
Westbye, Hans Jacob; McAleavey, Andrew
A.; Moltu, Christian
Patient Self-reports for Explainable Machine
Learning Predictions of Risks to Psychotherapy
Outcomes 2024
AI, Data, and
Digitalization
10.1007
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031-
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29
Borup, Christian; Vinter‐Jensen, Lars;
Jørgensen, Søren Peter German; Wildt,
Signe; Graff, Jesper; Gregersen, Tine;
Zaremba, Anna; Andersen, Trine Borup;
Nøjgaard, Camilla; Timm, Hans Bording;
Lamazière, Antonin; Rainteau, Dominique;
Hansen, Svend Høime; Rumessen, Jüri
Johannes; Munck, Lars Kristian
Prospective comparison of diagnostic tests for
bile acid diarrhoea 2024
Alimentary
Pharmacology &
Therapeutics
10.1111
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30
Zemelka‐Wiacek, Magdalena; Agache,
Ioana; Akdis, Cezmi A.; Akdis, Mübeccel;
Casale, Thomas B.; Dramburg, Stephanie;
Jahnz‐Różyk, Karina; Kosowska, Anna;
Matricardi, Paolo M.; Pfaar, Oliver; Shamji,
Mohamed H.; Jutel, Marek
Hot topics in allergen immunotherapy, 2023:
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10.1111
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Parsel, Sean M.; Riley, Charles A.; Todd,
Cameron A.; Thomas, Andrew J.; McCoul,
Edward D.
Differentiation of Clinical Patterns Associated
With Rhinologic Disease 2021
American
Journal of
Rhinology &
Allergy
10.1177
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Back, Anthony; Friedman, Tara; Abrahm,
Janet
Palliative Care Skills and New Resources for
Oncology Practices: Meeting the Palliative Care
Needs of Patients With Cancer and Their
Families 2020
American
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33 Nirvik, Pal; Kertai, Miklos D.
Future of Perioperative Precision Medicine:
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Predictive Pathways in Real Time 2022
Anesthesia &
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Nasser, Laila; McLeod, Shelley L.; Hall,
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Evaluating the Reliability of a Remote Acuity
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Annals of
Emergency
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Ashrafi, Reza A.; Ahola, Aila J.; RosengårdBärlund, Milla; Saarinen, Tuure; Heinonen,
Sini; Juuti, Anne; Marttinen, Pekka;
Pietiläinen, Kirsi H.
Computational modelling of self-reported
dietary carbohydrate intake on glucose
concentrations in patients undergoing Roux-enY gastric bypass versus one-anastomosis
gastric bypass 2021
Annals of
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Fallahzadeh, Ramin; Verdonk, Franck;
Ganio, Ed; Culos, Anthony; Stanley, Natalie;
Maric, Ivana; Chang, Alan L.; Becker,
Martin; Phongpreecha, Thanaphong;
Xenochristou, Maria; De Francesco, Davide;
Espinosa, Camilo; Gao, Xiaoxiao; Tsai,
Amy; Sultan, Pervez; Tingle, Martha;
Amanatullah, Derek F.; Huddleston, James
I.; Goodman, Stuart B.; Gaudilliere, Brice;
Angst, Martin S.; Aghaeepour, Nima
Objective Activity Parameters Track Patientspecific Physical Recovery Trajectories After
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Annals of
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Pfob, André; Mehrara, Babak J.; Nelson,
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Towards Patient-centered Decision-making in
Breast Cancer Surgery: Machine Learning to
Predict Individual Patient-reported Outcomes at
1-year Follow-up 2023
Annals of
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Xu, Cai; Pfob, André; Mehrara, Babak J.;
Yin, Peimeng; Nelson, Jonas A.; Pusic,
Andrea L.; Sidey-Gibbons, Chris
Enhanced Surgical Decision-Making Tools in
Breast Cancer: Predicting 2-Year Postoperative
Physical, Sexual, and Psychosocial Well-Being
following Mastectomy and Breast
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Annals of
Surgical
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Beswick, Daniel M.; Humphries, Stephen
M.; Balkissoon, Connor D.; Strand, Matthew;
Vladar, Eszter K.; Lynch, David A.; TaylorCousar, Jennifer L.
Impact of Cystic Fibrosis Transmembrane
Conductance Regulator Therapy on Chronic
Rhinosinusitis and Health Status: Deep
Learning CT Analysis and Patient-reported
Outcomes 2022
Annals of the
American
Thoracic
Society
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Shoop-Worrall, Stephanie J W; Cresswell,
Katherine; Bolger, Imogen; Dillon, Beth;
Hyrich, Kimme L; Geifman, Nophar
Nothing about us without us: involving patient
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Annals of the
Rheumatic
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10.1136
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dis-2021-
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Zhou, Yushy; Dowsey, Michelle; Spelman,
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SMART choice (knee) tool: a patient‐focused
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ANZ Journal of
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Chi, Wei Ning; Reamer, Courtney; Gordon,
Robert; Sarswat, Nitasha; Gupta, Charu;
White VanGompel, Emily; Dayiantis, Julie;
Morton-Jost, Melissa; Ravichandran, Urmila;
Larimer, Karen; Victorson, David; Erwin,
John; Halasyamani, Lakshmi; Solomonides,
Anthony; Padman, Rema; Shah, Nirav S.
Continuous Remote Patient Monitoring:
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Applied Clinical
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10.1055/s0041-
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Khademi Habibabadi, Sedigheh; Palmer,
Christopher; Dimaguila, Gerardo L.; Javed,
Muhammad; Clothier, Hazel J.; Buttery, Jim
Australasian Institute of Digital Health Summit
2022–Automated Social Media Surveillance for
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Applied Clinical
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Iivanainen, Sanna; Ekström, Jussi; Virtanen,
Henri; Kataja, Vesa V.; Koivunen, Jussi P.
Predicting Objective Response Rate (ORR) in
Immune Checkpoint Inhibitor (ICI) Therapies
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Applied
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Custom TKA: what to expect and where do we
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Klemt, Christian; Uzosike, Akachimere
Cosmas; Esposito, John G.; Harvey,
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The utility of machine learning algorithms for
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Janssen, Esther R.; Osong, Biche; Van
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Exploring Associations of Preoperative Physical
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AMPREDICT PROsthetics—Predicting
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Predicting first time depression onset in
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Zhang, Siyuan; Chen, Jerry Yongqiang;
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Accuracy of machine learning to predict the
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Chen, Jinying; Kiefe, Catarina I.; Gagnier,
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Distinct clinical phenotypes for Crohn’s disease
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Li, Jing; Du, Gaixin; Clouser, Jessica Miller;
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mBrain: towards the continuous follow-up and
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Neijenhuijs, Koen I.; Peeters, Carel F. W.;
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Shi, Jinyu; Liu, Tong; Ge, Yizhong; Liu,
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Cholesterol-modified prognostic nutritional
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Towards biomarkers for outcomes after
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Representations From Transformers:
Infodemiology Study of Blogs 2022 JMIR Cancer
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262
Pfisterer, Kaylen J; Lohani, Raima; Janes,
Elizabeth; Ng, Denise; Wang, Dan; BryantLukosius, Denise; Rendon, Ricardo; Berlin,
Alejandro; Bender, Jacqueline; Brown, Ian;
Feifer, Andrew; Gotto, Geoffrey; Saha,
Shumit; Cafazzo, Joseph A; Pham, Quynh
An Actionable Expert-System Algorithm to
Support Nurse-Led Cancer Survivorship Care:
Algorithm Development Study 2023 JMIR Cancer
10.2196
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263
Nagpal, Meghan S; Barbaric, Antonia;
Sherifali, Diana; Morita, Plinio P; Cafazzo,
Joseph A
Patient-Generated Data Analytics of Health
Behaviors of People Living With Type 2
Diabetes: Scoping Review 2021 JMIR Diabetes
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264
Williams, David D; Ferro, Diana; Mullaney,
Colin; Skrabonja, Lydia; Barnes, Mitchell S;
Patton, Susana R; Lockee, Brent; Tallon,
Erin M; Vandervelden, Craig A;
Schweisberger, Cintya; Mehta, Sanjeev;
McDonough, Ryan; Lind, Marcus; D'Avolio,
Leonard; Clements, Mark A
An “All-Data-on-Hand” Deep Learning Model to
Predict Hospitalization for Diabetic
Ketoacidosis in Youth With Type 1 Diabetes:
Development and Validation Study 2023 JMIR Diabetes
10.2196
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265
Lynch, William; Platt, Michael L; Pardes,
Adam
Development of a Severity Score and
Comparison With Validated Measures for
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JMIR Formative
Research
10.2196
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266 Hong, Grace; Smith, Margaret; Lin, Steven
The AI Will See You Now: Feasibility and
Acceptability of a Conversational AI Medical
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JMIR Formative
Research
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267
Nowinka, Zuzanna; Alagha, M Abdulhadi;
Mahmoud, Khadija; Jones, Gareth G
Predicting Depression in Patients With Knee
Osteoarthritis Using Machine Learning: Model
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JMIR Formative
Research
10.2196
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268
Scheder-Bieschin, Justus; Blümke, Bibiana;
De Buijzer, Erwin; Cotte, Fabienne;
Echterdiek, Fabian; Nacsa, Júlia; Ondresik,
Marta; Ott, Matthias; Paul, Gregor; Schilling,
Tobias; Schmitt, Anne; Wicks, Paul; Gilbert,
Stephen
Improving Emergency Department PatientPhysician Conversation Through an Artificial
Intelligence Symptom-Taking Tool: Mixed
Methods Pilot Observational Study 2022
JMIR Formative
Research
10.2196
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269
Sinha, Chaitali; Cheng, Abby L; Kadaba,
Madhura
Adherence and Engagement With a Cognitive
Behavioral Therapy–Based Conversational
Agent (Wysa for Chronic Pain) Among Adults
With Chronic Pain: Survival Analysis 2022
JMIR Formative
Research
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270
Baroutsou, Vasiliki; Cerqueira Gonzalez
Pena, Rodrigo; Schweighoffer, Reka;
Caiata-Zufferey, Maria; Kim, Sue; HesseBiber, Sharlene; Ciorba, Florina M; Lauer,
Gerhard; Katapodi, Maria; CASCADE
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Predicting Openness of Communication in
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JMIR Formative
Research
10.2196
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271
Rao, Kaushal; Speier, William; Meng,
Yiwen; Wang, Jinhan; Ramesh, Nidhi; Xie,
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Curtis, Jeffrey R; Arnold, Corey
Machine Learning Approaches to Classify SelfReported Rheumatoid Arthritis Health Scores
Using Activity Tracker Data: Longitudinal
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JMIR Formative
Research
10.2196
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272
Sezgin, Emre; Hussain, Syed-Amad; Rust,
Steve; Huang, Yungui
Extracting Medical Information From Free-Text
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Data Using Natural Language Processing
Methods: Feasibility Study With Real-world
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JMIR Formative
Research
10.2196
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358
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273
Gandrup, Julie; Selby, David A; Dixon,
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Classifying Self-Reported Rheumatoid Arthritis
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From a Smartphone App: Exploratory Analysis
Applying Machine Learning Approaches 2024
JMIR Formative
Research
10.2196
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274
Kawamoto, Shota; Morikawa, Yoshihiko;
Yahagi, Naohisa
Novel Approach for Detecting Respiratory
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Machine Learning Models Based on PatientReported Symptoms: Model Development and
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JMIR Formative
Research
10.2196
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275
Touzet, Alvaro Yanez; Rujeedawa, Tanzil;
Munro, Colin; Margetis, Konstantinos;
Davies, Benjamin M
Machine Learning and Symptom Patterns in
Degenerative Cervical Myelopathy: Web-Based
Survey Study 2024
JMIR Formative
Research
10.2196
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276
Hu, Baotian; Bajracharya, Adarsha; Yu,
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Generating Medical Assessments Using a
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JMIR Medical
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10.2196
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277
Greulich, Leonard; Hegselmann, Stefan;
Dugas, Martin
An Open-Source, Standard-Compliant, and
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Medical Research (OpenEDC): Design and
Evaluation Study 2021
JMIR Medical
Informatics
10.2196
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278
Ahne, Adrian; Khetan, Vivek; Tannier,
Xavier; Rizvi, Md Imbesat Hassan;
Czernichow, Thomas; Orchard, Francisco;
Bour, Charline; Fano, Andrew; Fagherazzi,
Guy
Extraction of Explicit and Implicit Cause-Effect
Relationships in Patient-Reported DiabetesRelated Tweets From 2017 to 2021: Deep
Learning Approach 2022
JMIR Medical
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10.2196
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279
Frid, Santiago; Fuentes Expósito, Maria
Angeles; Grau-Corral, Inmaculada; AmatFernandez, Clara; Muñoz Mateu,
Montserrat; Pastor Duran, Xavier; LozanoRubí, Raimundo
Successful Integration of EN/ISO 13606–
Standardized Extracts From a Patient Mobile
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JMIR Medical
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10.2196
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280
Danieli, Morena; Ciulli, Tommaso; Mousavi,
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Assessing the Impact of Conversational
Artificial Intelligence in the Treatment of Stress
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JMIR Mental
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10.2196
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281
Lawitschka, Anita; Buehrer, Stephanie;
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Silbernagl, Marisa; Zubarovskaya, Natalia;
Brunmair, Barbara; Kayali, Fares; Hlavacs,
Helmut; Mateus-Berr, Ruth; Riedl, David;
Rumpold, Gerhard; Peters, Christina
A Web-Based Mobile App (INTERACCT App)
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282
Vaidyam, Aditya; Halamka, John; Torous,
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Enabling Research and Clinical Use of PatientGenerated Health Data (the mindLAMP
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10.2196
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283
Matsuda, Shinichi; Ohtomo, Takumi;
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Miwako; Kuriki, Hiroshi; Nakayama, Terumi;
Watanabe, Shinichi
Incorporating Unstructured Patient Narratives
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Pharmacovigilance: Natural Language
Processing Analysis of Patient-Generated
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JMIR Public
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10.2196
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284
Murray, Kevin R; Foroutan, Farid; Amadio,
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Steven G; Bhat, Mamatha; Tinckam,
Kathryn J; Ross, Heather J; McIntosh,
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Remote Mobile Outpatient Monitoring in
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285
Ahmed, Sara; Archambault, Philippe; Auger,
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Joelle; Ptito, Alain; Swaine, Bonnie
Biomedical Research and Informatics Living
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Chicchi Giglioli, Irene Alice; Vidal-Alaball,
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An Artificial Intelligence–Driven Digital Health
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287 Gupta, Megha; Malik, Tanya; Sinha, Chaitali
Delivery of a Mental Health Intervention for
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288
Raclin, Tyler; Price, Amy; Stave,
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Combining Machine Learning, Patient-Reported
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10.2196
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Ribbons, Karen; Johnson, Sarah; Ditton,
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Using Presurgical Biopsychosocial Features to
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Digital Remote Monitoring Using an mHealth
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Lee, Sangkyu; Deasy, Joseph O; Oh, Jung
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Patricia A; Partridge, Ann H; Michiels,
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Prediction of Breast Cancer Treatment–
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Tahami Monfared, Amir Abbas; Stern,
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Stakeholder Insights in Alzheimer’s Disease:
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Meaningful Clinical Applications of PatientReported Outcome Measures in Orthopaedics 2021
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Beenhakker, Lian; Wijlens, Kim A. E.;
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Development of machine learning models to
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Montisci, Andrea; Palmieri, Vittorio; Vietri,
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Big Data in cardiac surgery: real world and
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Arslan, Naciye Çiğdem; Gündoğdu, Aycan;
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Efficacy of AI-Assisted Personalized
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Habenicht, Richard; Fehrmann, Elisabeth;
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Machine Learning Based Linking of Patient
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Clement, Nick D.; Clement, Rosie; Clement,
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Predicting Functional Outcomes of Total Hip
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Schonfeld, Ethan; Pant, Aaradhya; Shah,
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Evaluating Computer Vision, Large Language,
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Zhiying Huang; Shaoxiong Hu; Yanqing
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Multi-Source Data Interpretation For Field
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Tohidinezhad, Fariba; Willems, Yves;
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Prediction models for brachytherapy-induced
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Atiyeh, Bishara; Emsieh, Saif; Hakim,
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A Narrative Review of Eye-Tracking
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Alper, David P.; Almeida, Mariana N.;
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Perceived Age and Gender Perception Using
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Improvements to PTSD quality metrics with
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Associating persistent self-reported cognitive
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Artificial intelligence in healthcare—the road to
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What Huntington’s Disease Patients Say About
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Predicting subjective failure of ACL
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Influenza Screening via Deep Learning Using a
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Harrison, Conrad; Loe, Bao Sheng; Lis,
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Maximizing the Potential of Patient-Reported
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Patient Perspectives on the Usefulness of an
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Use of Patient-Reported Symptoms from an
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Precision Assessment of COVID-19
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De, Amrita; Huang, Ming; Feng, Tinghao;
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Analyzing Patient Secure Messages Using a
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Dimitri, Paul; Fernandez-Luque, Luis;
Banerjee, Indraneel; Bergadá, Ignacio;
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Thomas; Senniappan, Senthil; ThomasTeinturier, Cécile; Tsai, Meng-Che; Anuar
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An eHealth Framework for Managing Pediatric
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Harrison, Conrad J; Sidey-Gibbons, Chris J;
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Recursive Partitioning vs Computerized
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Lu, Zhaohua; Sim, Jin-ah; Wang, Jade X;
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Natural Language Processing and Machine
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Turino, Cecilia; Benítez, Ivan D; RafaelPalou, Xavier; Mayoral, Ana; Lopera,
Alejandro; Pascual, Lydia; Vaca, Rafaela;
Cortijo, Anunciación; Moncusí-Moix, Anna;
Dalmases, Mireia; Vargiu, Eloisa; Blanco,
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Management and Treatment of Patients With
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Aiming to Improve Continuous Positive Airway
Pressure Treatment Compliance: Randomized
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Dolatabadi, Elham; Moyano, Diana; Bales,
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Abstract (if available)

Abstract Healthcare is both an intersubjective experience and an increasingly automated system for making meaningful decisions on the basis of captured data. Two evolutionary tendencies in healthcare technology indicate a trend towards drawing these disparate characteristics into closer alignment, first: the arc initiated more than forty years ago by the shift from paper to electronic health records (EHR), which continues apace with the introduction of artificial intelligence (AI); and second: the use of patient-reported outcome measures (PROMs) as instruments for subjective, embodied, and context-rich measurement of patient experience. While the consequences of this convergence have only begun to be studied from a clinical standpoint, this dissertation seeks to understand the cultural and social ramifications of computational approaches to understanding patient experience, by placing large scale data analytics into a shared context with the medical humanities and disability studies. To this end, three separate approaches are interleaved: First, an exploration of the possibilities for analysis as a precursor to imagination, centered on the use of patient-generated health data and AI. Second, a narrative review of technical and scientific literature that addresses how PROMs and AI may be used together. The aim of this review is to collect the various narratives that produce, and are produced by, this convergence. In sum, these narratives are seen to constitute a sociotechnical imaginary, or collective sense of what is possible. The third method applies creative techniques—poetry, lyric essay, and image-making—to highlight the need for artifacts to understand and navigate intersubjective experience of both illness and technology.

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Asset Metadata

Creator Fischbeck, Luke (author)

Core Title Learn to ask: patient-generated health data, artificial intelligence, and the synthesis of care

Contributor Electronically uploaded by the author (provenance)

School School of Cinematic Arts

Degree Doctor of Philosophy

Degree Program Cinematic Arts (Media Arts and Practice)

Degree Conferral Date 2025-05

Publication Date 01/30/2025

Defense Date 08/28/2024

Publisher Los Angeles, California (original), University of Southern California (original), University of Southern California. Libraries (digital)

Tag critical AI studies,disability studies,medical humanities,medical technology: social and cultural effects,OAI-PMH Harvest,patient-reported outcomes

Format theses (aat)

Language English

Advisor Willis, Holly (committee chair), Gotsis, Marientina (committee member), Spray, Stephanie (committee member)

Creator Email lfischbe@usc.edu,usc.manned748@passmail.net

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Legacy Identifier etd-FischbeckL-13798

Document Type Dissertation

Format theses (aat)

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