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Chronically informed: hope for people with chronic illness

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Chronically informed: hope for people with chronic illness

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Content 1
Chronically Informed: Hope for People with Chronic Illness
Capstone Project Final Paper
Jessie Shay
University of Southern California
Suzanne Dworak-Peck School of Social Work
DSW Program
Dr. Robin Kay-Wicker, Chair
June 2024

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Table of Contents
I. Abstract 3
II. Acknowledgements 4
III. Positionality Statement 5
IV. Problem of Practice and Literature Review 6
V. Conceptual/Theoretical Framework 13
VI. Methodology 13
VII. Project Description 18
VIII. Implementation Plan 23
IX. Evaluation Plan 27
X. Challenges/Limitations 29
XI. Conclusions and Implications 30

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I. Abstract
This paper describes Chronically Informed, a project that improves the lives of chronic illness
patients. Almost 50 percent of people living in the United States live with chronic illness
(Robinson et al., 2020), and according to the Chronic Care Collaborative, more than 60 percent
of Coloradoans live with a chronic disease (Chronic Care Collaborative, n.d.). The experience is
common and yet still misunderstood, and a wicked problem has been created by society’s lack of
understanding of the patient experience. The pervasive nature of this wicked problem prevents
chronic illness patients and providers from partnering in care. Chronically Informed is a website
that showcases short-form videos for chronic illness patients, by chronic illness patients, with the
goals of creating hope, helping patients partner with providers, and improving healthcare. The
project will directly impact Social Work practice, expanding the reach of social workers by using
technology to build skills and change the narrative for patients. It will also work to Close the
Health Gap for patients with chronic illness (Close the Health Gap-Grand Challenges for Social
Work, 2018). Chronically Informed began by focusing on patients in Colorado and plans to
expand the project to include patients and providers in the rest of the United States. Living with
chronic illness is not a unique experience. It is crucial that more work be done to better the lives
of those living with chronic illness.
Keywords: Chronic Illness, patients, healthcare, social work

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II. Acknowledgements
First and foremost, I would like to thank Dr. Robin Kay-Wicker, my other professors and
colleagues at the University of Southern California, and the stakeholders who helped me create
this project. I am a better Social Worker and human because of you. Thank you to the Chronic
Care Collaborative. Partnering with you has given me the strength and knowledge to better
advocate for patients with chronic illness and has helped me on my own journey of creating
innovative change in the community.
I would like to express my deepest appreciation to my partner and biggest cheerleader,
Chase Watson. Without your support and love, I would have never been able to go back to
school, make it through this doctoral program, create Chronically Informed, or grow into the
person I am today. There have been many late nights and school-filled weekends. Your patience
and understanding have not gone unnoticed. I am so grateful for you, and I love you.
I am also deeply indebted to my mother, Melissa Shay. She read, edited, and provided
feedback on almost every paper I wrote in this program. She deserves an Honorary Doctorate for
her contributions. I could not have finished this program without her. I would also like to extend
my sincere gratitude to my father, Reid Shay, who has provided (mostly) unwavering support
each time I have gone back to school, and has sat with me, both in moments of struggle and in
moments of joy. It is understandable and humorous that he has strongly suggested that this be my
last academic endeavor.
Finally, to my friends who have listened to me ramble about my research and my project,
who were incredibly empathetic when I struggled with school, and who have celebrated my
successes, I cannot begin to express my gratitude to you. Throughout the vicissitudes of this
journey, you are the life raft that has kept me afloat.

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III. Positionality Statement
Completing the work for this paper and project has been complex and challenging due to
my own identities. I am a queer, white woman who lives with chronic illness, and this has
impacted the way I view this work. Doing research and gathering data has been informative but
has also challenged the way I view myself and the world of chronic illness. I have learned so
much about myself and this subject, and I am eternally grateful for this process. At the same
time, reading about chronic illness and being immersed in the subject has been demanding and,
at times, triggering. The information that I gathered reinforced the knowledge I have learned
first-hand about stigmas faced by those of us with chronic illness, but it is essential that I
consider my whiteness, queerness, and gender when looking at the experiences I have had. The
privilege I have had as a white person has led me to see the world through a lens that differs from
that of many other patients. I strive to challenge the assumptions I have made due to my
identities while creating this project.
I am resilient and driven, but there have been times that I have questioned whether I am
qualified to try and help solve the problems patients with chronic illness face when attempting to
access medical care. While writing this paper and creating this project, I have had difficulty
accessing care, myself. I have been forced to fight to get the insurance coverage I pay for and
deserve to manage my chronic illnesses. It was during this struggle that I realized that this
project is not a way for me to fix things for others; it is a way for me to bring people together to
create change. I need Chronically Informed just as much as the stakeholders I worked with need
it. We all need hope.

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IV. Problem of Practice and Literature Review
Closing the Health Gap
This paper is focused on the Grand Challenge of Closing the Health Gap. According to
Close the Health Gap-Grand Challenges for Social Work (2018), many Americans do not have
adequate healthcare. Access to healthcare can be impacted by several factors that transcend the
current way healthcare is addressed in the United States. There is more to healthcare than simply
treating the individual. Systemic issues such as environmental factors, the economy, and social
issues all impact the way healthcare is experienced by the individual receiving it. To Close the
Health Gap, changes must be made at a systems level and not just at the individual level. By
Closing the Health Gap, individual and family well-being will improve; by changing the system
in which healthcare exists, society and those with chronic illness will benefit. The need to Close
the Health Gap is a Grand Challenge with many facets. The following paper addresses one
wicked problem within this Grand Challenge.
Literature Review and Population Experience
One wicked problem within the Grand Challenge of Closing the Health Gap involves the
realities of living with chronic illness and society’s general lack of recognition of this experience.
Chronic illness is defined as a condition that lasts a year or more and limits activities of daily
living, requires ongoing medical attention, or both (Center for Disease Control, 2022). Almost 50
percent of the population in America lives with chronic illness (Robinson et al., 2020), and of
adults aged 18 to 34, 22.3% have more than one chronic health condition (Watson et al., 2022).
See Appendix A for more information. The Chronic Care Collaborative, a non-profit in Colorado
dedicated to advocating for patients with chronic health conditions, states that more than 60% of
Coloradoans live with a chronic health condition (Chronic Care Collaborative, n.d.). According

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to Shay (2023, Summer Semester), unique experiences interfacing with the medical system that
go beyond the normal frustrations of trying to access preventative care are experienced by
patients with chronic illness. Lab testing, medications, specialized care, and imaging all play a
role in first being diagnosed and then later treated for chronic health conditions. And this is just
the beginning, as chronic illness can last for the entirety of a patient’s life.
It is complex and riddled with challenges to live with a chronic illness. Chronic illness
patients face trials that people without chronic illness do not. It is worth identifying and
unpacking this wicked problem in order to better the lives of those experiencing it (Shay, 2023,
Summer Semester).
Role and Identity
Chronic illness can change the way people view themselves, which can impact diagnosis,
treatment, and coping processes. Eassey et al. (2020) find that the way an individual perceives
and experiences their chronic illness is crucial to understanding each person. Every person who
lives with chronic illness has a different lived experience. The way people cope with their illness
is informed by the way they see themselves. When patients view themselves as victims due to
being sick, this affects the view they have of themselves as individuals and how they cope with
their chronic illness experience (Ahmadi et al., 2022). Viewing oneself as a victim can be a
defining characteristic of living with a chronic illness. If one does view themself this way, it can
be very challenging to escape that role.
Not all patients have difficulty accepting their illness; furthermore, some find it
empowering (Eassey et al., 2020). The understanding of self can change after diagnosis
(O’Donnell & Habenicht, 2022; Rassart et al., 2021). Managing a chronic illness often means

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managing health conditions for the rest of your life, and this changes the way people view
themselves (Joyce & Jeske, 2019).
Stigma and Mental Health
Chronic illness patients often experience different forms of stigma that can greatly impact
their lives beyond diagnosis and treatment (Earnshaw & Quinn, 2012; Furlotte & Schwartz,
2017). Stigma is not an interpersonal issue; it is a societal issue with social structures holding
stigma in place (Goldberg, 2017). In some cases, stigma can change one’s conception of self
(O’Donnell & Habenicht, 2022). This is intertwined with the change in role and identity that can
occur after diagnosis. Stigma can lead to increased anxiety and, in some cases, depression
(Chaudoir, 2022; Dattilo et al., 2022). Furthermore, an individual’s lived experience of privilege
and oppression in the rest of their life can be amplified by stigma (Monaghan & Gabe, 2019).
Patients report that race, gender, sexual orientation, and poverty all intersect with their
experienced medical stigma (Whittle et al., 2017). As patients navigate treatments and medical
appointments, stigma is a thread holding together the time spent dealing with chronic illness.
Mental health can also play a role in chronic illness, and people with chronic disease are
more likely to exhibit mental distress. Impairment and disability impact a person’s stress levels
which can affect their mental health, physical health, and ways of coping (Verhaak et al., 2005).
Patients with chronic illness often say that they fear that their symptoms might worsen; a fear
referred to as Health Anxiety (HA) in relation to the illness itself, and less as a psychiatric
diagnosis (Lebel et al., 2020).
Doctor Interactions
Another thread of experience exists in the process of interacting with different physicians.
Medical care is a necessity for those with chronic illness, and accessing it often presents

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challenges and pitfalls. Finding a patient-centered and personable medical team is crucial to
success in caring for a chronic illness (Forestier et al., 2019; Fox & Chesla, 2008). It commonly
takes time to find a good patient-physician fit (Joyce & Jeske, 2019). Lack of empathy and time
with practitioners leaves patients not receiving the care that they need (Eassey et al., 2020),
meaning that patients do not feel truly cared for or seen as whole people while dealing with
chronic conditions that can affect every aspect of their lives. These experiences are supported by
practitioner data reflecting that they sometimes refuse to care for patients with chronic illness
and, when they do care for them, they may not always know how to do so (Lagu et al., 2022).
This data further demonstrates that patient experiences of stigma are not imagined – it exists and
is often perpetuated by physicians. Physicians need training around chronic illness. Some
physicians say that patients with chronic illness are demanding (McManimen et al., 2019).
Patients with chronic illness are not treated as people with complex, life-altering conditions, but
instead as individuals experiencing symptoms. The research around how physicians treat patients
proves this (Ironside et al., 2003), leaving patients without care. According to Shay (2023,
Summer Semester, p. 11), “data collected…in June of 2023 found that only 1 out of 54 medical
workers admitted to not liking to work with chronic illness patients, while 3 out of 54 said they
do not think chronic illness patients experience stigma.”
Stakeholders
The healthcare industrial complex is comprised of many stakeholders. Stakeholders
include providers, patients, payers, and purchasers (Petkovic et al., 2020). Each stakeholder plays
a different role in addressing the need to Close the Health Gap for those with chronic illness. The
role each stakeholder has determines their level of involvement in the process of creating a
solution.

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Employers and purchasers typically have little interest and power related to their role
in Closing the Health Gap. It is important to keep them in mind while working to address this
wicked problem, but it is also important to remember that they do not have a lot of interest or
influence, other than how they choose health insurance companies for their employees and
negotiate contracts with them.
The second category includes patients, families, advocates, physicians, and medical
workers. This group is probably the most frustrated and the least listened to about the issue. They
are crucial to making progress because they are most impacted. These patients and professionals
are underrepresented in the process (Petkovic et al., 2020).
The group with the least amount of interest and the most power includes payers, also
known as insurance companies, Medicare, and Medicaid. This group of entities has a lot of
power given that they determine how patients receive coverage and how doctors perform their
duties. However, patients report struggling with health insurance companies as they wait long
periods on hold with help centers (Lee et al., 2020), which shows that payers may be less
interested in change.
Solution Landscape
Individuals with chronic illness often experience shifting identities that can be
complicated and difficult. Three existing solutions are introduced in the following section: 1)
online support, 2) nurse-led solutions, and 3) primary care interactions.
Online Support
Patients with chronic illness cannot always travel to access support due to their unique set
of health conditions. One way that these patients can receive support is through online programs.
Participating actively in their own recovery is important for chronic illness patients. Online

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support services can offer patients access to information such as reading blogs or other web
resources (Kim & Lee, 2014). Patients may also join online support groups or peer-to-peer
networks that provide a forum for patients to share stories and experiences and choose their level
of engagement. Some interact regularly while others simply read other people’s posts. Both
strategies can provide support for patients with chronic illness (Kanter et al., 2019).
Nurse-Led Interventions
Many interventions for the chronically ill are led by physicians, but there is a body of
research that shows that nurse-led interventions may change the landscape of how the
chronically ill are cared for (Hirschman et al., 2015; Van Spall et al., 2017). Nurse-led
interventions include programs like transitional care. The Transitional Care Model (TCM) is an
intervention that closes the health gap for hospitalized elderly, chronically ill patients being
discharged. The TCM both makes it less likely that patients will be readmitted to the hospital and
increases the quality of patients’ lives (Morkisch et al., 2020). Interventions like the TCM offer a
new frontier in care where advanced practice nurses lead the care for the chronically ill. Research
demonstrates that the TCM results in fewer hospital readmissions (Hirschman et al., 2015; Van
Spall et al., 2017), and this type of care could possibly work for other populations as well.
Concierge Primary Care and Direct Pay Services
Another form of care that is altering the way medicine is traditionally delivered is
concierge and direct pay primary care services. Concierge Primary Care and direct pay doctors
are unique in the way they care for patients, and may be the future of medicine for those who can
afford it. Both concierge care and direct pay doctors typically charge a monthly fee for their
services. In both cases, doctors can spend much more time with each patient and tailor services
to the patient’s needs (Huff, 2015). By having fewer patients, these specialty primary cares can

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care for patients much more effectively by offering same-day appointments and answering
emails quickly. They still refer out for specialist care (Dalen & Alpert, 2017).
Since patients often feel like they do not get to spend enough time with their doctors, this
solution is a favorable one. The criticism of concierge care is that it is often very expensive and
not something that is accessible for most people. Direct pay doctors may offer a more affordable
option. Neither plays by the traditional rules of insurance, making it attractive to patients and
doctors (Huff, 2015).
Missing Solutions
In the solution landscape there is a clear lack of hope for patients. Each of the previously
mentioned solutions offer chronic illness patients different approaches to address the problems
they face with access to care by giving patients room to access support through non-traditional
methods, but they do not offer patients a way to move through the process with a belief that
better access to care is possible and that they can create a pathway to success. This is what
Chronically Informed offers by creating hope. According to Synder (2002, p. 249), “hope is
defined as the perceived capability to derive pathways to desired goals, and motivate oneself via
agency thinking to use those pathways.” One website, The Mighty, shares stories by people
living with chronic health conditions with the possibility of creating hope for other patients, but
the focus of the site is on chronic illness in general and not on how to navigate the medical
system (The Mighty. Making health about people., n.d.). The current solutions that exist mostly
ignore the crucial creation of hope that is necessary to help chronic illness patients feel as though
they can move from helplessness to self-efficacy.

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V. Conceptual/Theoretical Framework: Learned Helplessness Theory
So much of living with a chronic illness is uncontrollable. Learned Helplessness Theory,
developed by Martin Seligman, explains what happens when chronic illness patients regularly
run into uncontrollable circumstances related to their health. The result is both motivational and
cognitive. People experiencing uncontrollable circumstances are less likely to voluntarily initiate
actions to change events that are coming up in the future. This impacts motivation.
Simultaneously, people experiencing uncontrollable circumstances sometimes have trouble
learning that it is possible to have a successful outcome. This is a cognitive response (Maier &
Seligman, 1976). According to Shay (2023, Fall Semester):
This theory explains the response chronic illness patients have when facing ongoing
uncontrollable medical circumstances. Even when faced with the opportunity to advocate
for themselves and attempt to partner with providers, an inability to initiate actions and
the belief that there is no option for a successful outcome prevent patients from being
able to have the agency to create real change for themselves. Learned Helplessness
Theory explains why so many patients end up unable to access quality medical care. They
are stuck. (p. 5)
VI. Methodology
Design Thinking and Design Justice were used throughout the design process and the
formation of the Design Criteria (see Appendix B). Both were crucial to the formation of Phase
One of Chronically Informed, which is the focus of this paper. According to Liedtka et al.
(2015), co-creation of a project is key to creating a project that is truly useful to and wanted by
the beneficiaries and end-users. It is necessary to give stakeholders prototypes and examples of
the project to get their direct feedback. Keeping this in mind, stakeholders, which included

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patients, caregivers, various providers, and advocates, were at the core of the process. They were
included in every step of the creation of this project.
Design Thinking: Low Fidelity Prototyping
A low-fidelity prototype of Chronically Informed was created in January 2024 based on a
survey of 54 providers and 12 chronic illness patient interviews that were conducted in 2023.
Based on feedback from patients and professionals through a four-person focus group, feedback
from five individual interviews, plus other written feedback, the platform was then updated with
a landing page, an “About” page describing the project, a “Videos” page that had video updates
on the project and would eventually include patient videos, and a “Contact” page that included a
mailing list sign-up, the project’s email address, and a contact form. The stakeholder feedback
included what text should be included on each page, how the pages should be designed, what
topics should be the focus of the first patient videos, and the need for the creation of a video
talking about the driving force behind the project. See Appendix C for visual depictions of the
brainstorming sessions. These suggestions were implemented after feedback was received. The
survey used to evaluate the project was updated to reflect feedback as well. The feedback
determined what demographic information should be gathered and what questions about website
use should be asked.
Design Thinking: High-Fidelity Prototyping
The platform was ready to be piloted after four patients with chronic illness made videos,
including videos covering the first three topics requested by focus group participants. Two of the
videos were edited, summarized, and had resource links added to the summaries. To finish
preparing for the high-fidelity prototyping meetings, one for patients and one for
providers/advocates, the videos and text were added to the online platform.

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On February 17, 2024, the first pilot session occurred, in a one-on-one format, with the first
patient to see the high-fidelity prototype of the website. The feedback received was helpful and
mostly positive. The first group prototyping session was held on February 19, 2024. This session
was made up of five patients with chronic illness. The patients had lots of constructive feedback
and ideas, including making changes to the format of the resources on the platform, reformatting
the survey, and changing some design elements on the website. The next pilot session was on
February 21, 2024, and included four professionals who work with patients with chronic illness.
They had similar feedback about design elements and the way resources were formatted. They
also had feedback about the order of the questions on the survey.
After these initial piloting sessions, three more meetings with professionals were held to
gather feedback on the website and survey. Out of all the sessions, only one pilot session was
done in person. The in-person session was especially helpful because the professional was able to
navigate the site themself. Overall, the high-fidelity prototype was piloted with six patients with
chronic illness and seven professionals who work with patients. It is important to note that many
patients are also professionals and vice versa. Pilot session participants were encouraged to
attend whichever session they felt most comfortable attending. Updates were made to the
platform based on the high-fidelity prototype pilot session feedback to create the version of
Chronically Informed that was used for the Learning Launch in April 2024.
Design Justice Principles
Design Justice Principles were a guiding force throughout the creation of Chronically
Informed. The Design Justice Network has defined ten Design Justice Principles (Read the
Principles, n.d.). While all ten principles were considered in the development of this project,
three principles were the focus while creating Chronically Informed.

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The first principle that was of great importance to the design process of the project was
Principle 2, which focuses on making sure that the voices of the people who are most impacted
by the issue are centered in both the conversation about the problem and the creation of the
solution (Read the Principles, n.d.). By interviewing patients and surveying providers at the
beginning of this work, the people most impacted by this wicked problem were centered in the
creation of Chronically Informed. Each step of the way, patients led the discussions,
brainstorming, creation, and iteration of this project. At no point was a decision made about the
formation of this innovative solution that did not include patients at the core of the work.
Second, Principle 3, which focuses on the necessity of not putting the designer’s
intentions first but instead on prioritizing the community impact of the design, was a guiding
factor in the process (Read the Principles, n.d.). The original design of the project was built
around the idea of a toolkit, but as soon as stakeholders were included in the process, it became
clear that a toolkit was not what beneficiaries wanted. Beneficiaries were very clear about
wanting information shared in as many ways as possible, with a focus on the creation of hope for
patients with chronic illness through the sharing of patient stories. Video testimonials were
almost universally the format that was requested by stakeholders for the website. If community
needs were not put before the designer’s intentions, Chronically Informed would be an entirely
different project, and the community would not be benefiting in the same ways that it is now.
Finally, the understanding that everyone is the expert of their own experience is the basis
for Principle 6 (Read the Principles, n.d.). Principle 6 is the heart of this project. Chronically
Informed is, at its core, a project that believes wholeheartedly that patient experience is expert
experience. Each patient’s story of navigating the medical system is evidence that patients have
knowledge built from lived experience that makes them experts on their own journeys. The basic

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premise of this entire endeavor is to make each patient’s example of what has worked for them
evidence that other patients can succeed as well. Nothing is more important to this project than
the understanding that patients are the best people to speak about their own efforts to navigate
the medical system.
A large focus in the work that was done, and continues to be done, focuses on the
intersectionality of patient identity. Patients are not only defined by their experience with chronic
illness; they are also defined by the amalgamation of their identities. Race, gender, ethnicity,
sexual orientation, primary language, country of origin, etc. all impact patient experience.
Focusing on the design justice aspects of this work has allowed Chronically Informed to take
intersectionality into consideration as the project was created and continues to grow. One goal of
the project is to show as many different types of patient stories as possible to make sure that
visitors to the site can find someone they identify with while accessing support.
Market Analysis
Because the end-users (chronic illness patients and their providers) were included in
every step of the prototyping process, it is clear that there is a need for this project. Stakeholders
have said that they crave a way for patients to help other patients. In Phase One of this project,
stakeholder needs have been at the core of the design of this work. The same will be true for
Phase Two. The offer by the Chronic Care Collaborative (CCC) to include Chronically Informed
under the umbrella of its work also shows the excitement surrounding the project. There is
nothing like it available to chronic illness patients or their providers. This project is not only
needed, it was created in direct response to those needs being voiced.

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VII. Project Description
Chronically Informed, which can be found at chronicallyinformed.org, builds on previous
solutions, like online support groups, by creating design criteria for the project (Appendix B) that
are able to iterate and pivot as necessary and help chronic illness patients become more
empowered. The design criteria were specifically created to Close the Health Gap for patients
with chronic illness, as described in Close the Health Gap-Grand Challenges for Social Work
(2018). This project will have two phases. A Learning Launch of Phase One has been completed,
and Phase Two will follow. Phase One focuses on patients. Phase Two will focus on providers.
Phase One: Patients
Phase One of this solution is a website that provides videos co-created by patients sharing
success stories and practical techniques which help lead other patients to become empowered as
they navigate the medical system. Patients are bombarded with information when they become
ill, get diagnosed, and seek treatment for chronic conditions, but hardly any of the resources
provided to patients include information on how to understand and use the system itself. This
project directly works to Close the Health Gap for patients with chronic illness.
Research shows that working with practitioners can be trying and make accessing
treatment very difficult. There is often a power imbalance as patients rely on practitioners for
care. It is crucial that patients with chronic illness find a way to partner with providers, with both
parties having an equal say in diagnosis and treatment. The chance for patients to partner with
providers helps patients access better care. Trainings like “Take Your Power Back” address
patient/provider interactions, but they often focus on other specific issues in communication and
do not focus on chronic illness (Take Your Power Back, n.d.). Patients who have successfully

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partnered with providers and navigated the medical system are able to share their experiences
and help their peers through videos shared on the platform.
There are several forums and online communities for people with chronic illness, many
of which include groups on Facebook and other forms of social media. These include public
groups such as the Colorado Spoonies on Facebook (Facebook, n.d.). There is no reason to
recreate the wheel. This project offers a hopeful take on support, with a focus on patient
achievement.
The videos are less than ten minutes in length. Interviews of chronic illness patients show
that around ten minutes is the maximum time they would want to spend watching a video. There
are text descriptions of each video describing the information provided in detail. This makes the
platform more accessible to those who learn best through reading. Closed captioning is optional
on every video, and links to resources that have been beneficial to the patient and that are
mentioned in the video are provided below the description text. The goal is to make the videos,
descriptions, and additional resources as accessible as possible. Videos are embedded in the
platform using Vimeo. Social media is used to market the site by showing short clips of videos
and directing patients and other consumers to the website for the entirety of the content. These
ideas were trends in the interview responses provided by chronic illness patients when asked
about what they would like out of the platform.
The final stage of Phase One will be to expand the project to the rest of the United States.
Currently, Chronically Informed has focused on Colorado patients with chronic health needs.
The next frontier for the project is to scale Chronically Informed to include the rest of the United
States. Due to insurance differences between countries, it is currently expected that the project

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will only focus on patients in the United States. However, some aspects of the site might still be
useful to patients in other countries.
Phase Two: Providers
Phase Two will focus on training providers on the needs of chronic illness patients and
how to partner with them. It may also include videos made by providers. The platform used for
Phase One of this project will also be used for Phase Two. Phase Two will be specifically
marketed towards providers.
Theory of Change: Self-Efficacy Model
This project helps chronic illness patients partner with their providers and better navigate
the medical system using the Self-Efficacy Model. The Self-Efficacy Model offers a theory of
change that allows Chronically Informed to be effective. The model has four components:
performance outcomes, vicarious experiences, verbal persuasion, and physiological feedback
(Self-Efficacy, 2022). When these components come together, patients with chronic illness can
overcome the learned helplessness that comes with the uncontrollable nature of chronic illness.
By providing an online platform for Coloradoans to share stories of hope, success, and
practical techniques for navigating the medical system, vicarious experiences will lead to selfefficacy. This online platform also allows for verbal persuasion (support) from peers as they
encourage those watching the videos to strive for change. Performance outcomes will be shown
by virtual beneficiary feedback using a Qualtrics survey and data collected on how the website is
being used. Slower breathing will occur through relaxed exhalation patterns created by the
feeling of hope and provide physiological feedback (Antonelli et al., 2020). This leads to calm
and improved mental well-being (Rauch et al., 2022). As patients attempt to partner with

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practitioners more equally and better navigate the medical system, they will have access to
improved medical care.
Each step of the way, Chronically Informed has included all four components of the SelfEfficacy Model. Best practices say to put end-users and beneficiaries at the heart of the work. In
creating Chronically Informed, stakeholders have been a part of every step of the creation
process. Due to the commitment to the theory of change and best practices, it is incredibly
realistic that this project will create hope, improve patients’ ability to partner with providers, and
improve healthcare.
Revised Logic Model
To create Chronically Informed, several resources were needed, including staff time,
patients who were willing to create videos, and website design tools. It was also necessary to
build partnerships and create a website. The desired results of the project fall into three
categories: 1) outputs, 2) outcomes, and 3) impact. Chronically Informed has led to four outputs,
including links to outside resources, written video descriptions, ten patient-led videos, and social
media branding. While not all of the videos have been launched at this point, a new video
launches every other week. The outcomes of the project include increased patient hope and
skills, as well as patients being more likely to advocate for themselves and partner with
providers. The overall impact of Chronically Informed will be providers and patients working as
partners in patient care, resulting in better healthcare for patients.
As previously discussed, by using the four components of the Self-Efficacy Model,
Chronically Informed will move patients from a place of learned helplessness to a place of selfefficacy. It achieves this by creating hope and showing chronic illness patients, through videos
made by patients just like them, that it is possible to navigate the medical system in a more

22
effective way. With a better toolbox of ideas and skills on how to better navigate the medical
system, patients are more able to partner with providers, which improves healthcare. This
process is shown in the Logic Model in Appendix D.
Ethical Consideration
Many ethical issues were carefully considered in the making of this project. The main
ethical concern is that patients who voluntarily make videos for Chronically Informed are
sharing personal and sometimes sensitive information about themselves. These videos are made
public on the internet, and anyone can view them. To address ethical concerns related to patients
sharing personal information in the videos, several efforts were made to address possible
negative consequences. First, people volunteer to make videos and choose what they are
comfortable sharing. No one is asked or required to share anything they are uncomfortable
sharing. Second, patients who make videos are given an information guide on how to make
videos for the platform that reminds them not to share any identifying information, and they each
sign a video release that includes a statement informing them that they have the right to request
that any video they have made be removed from the website at any time. The goal of the project
is to support patients, and this includes the patients who voluntarily make videos for the project.
Likelihood of Success
Chronically Informed has met with approximately a dozen advocacy agencies in the
Denver Metro area and worked with CCC since its inception. CCC is a nonprofit in Colorado
dedicated to advocating for patients with chronic health conditions. This relationship has been
incredibly fruitful and led CCC to offer Chronically Informed the opportunity to become a
project under its umbrella of work. This partnership will give Chronically Informed 501(c)3
status and allow for the raising of funds to sustain the project. A lawyer is currently offering pro

23
bono help to create a legally binding Memorandum of Understanding (MOU) between CCC and
Chronically Informed that will allow Chronically Informed to remain its own project, allow
either party to terminate the agreement at any time, require all funds for the project to be raised
by Chronically Informed, and have Chronically Informed pay a 7% fee to CCC’s fiscal sponsor,
The Fund for a Healthier Colorado.
It will take ongoing work to make sure that videos continue to be collected and the
project is shared with as many people as possible. Chronically Informed will benefit greatly from
being a project under CCC due to its vast network of patients and advocates and its willingness
to support the work of the project. It will also have support from many of the agencies consulted
while creating Chronically Informed. This project is not only sustainable, it also has lots of
community support and beneficiaries who are already using the project to better their lives.
VIII. Implementation Plan
Learning Launch
A Learning Launch of the project took place on April 2, 2024. See Appendix E for an
Implementation Timeline. Three patient videos were launched at the same time to have a starting
bank of videos for patients to watch when they visit the site. After that, a new patient video has
been launched every other week. The current plan is to continue this schedule for releasing new
videos.
During the Learning Launch, visits to the site will be tracked closely, as will survey
responses. As shown in Appendix F, 230 unique visitors had been to the website in the first 50
days of the Learning Launch, with 5.2% of visitors returning to view the site more than once.
Overwhelmingly, the top source of traffic to the website has been through Facebook. This is not
surprising given the small amount of money spent on Meta ads during the first few weeks of the

24
Learning Launch. Other top sources of traffic include directly accessing the URL, Google search,
and Instagram (in that order). The data showing that people are accessing the site by URL is
interesting and is proof that in-person marketing of the site is key. Sharing of the URL is
primarily done in person, while Facebook and Instagram are more likely to be accessed through
online outreach. The third most frequent way Chronically Informed visitors get to the site is by
using the Google search engine. This is exciting and proves that Search Engine Optimization
(SEO) being used by the project has been successful so far. Individuals who use the Google
search engine to look for “Chronically Informed,” and terms related to it, are being given the
Chronically Informed website as a result of their search terms. Good SEO is important to making
sure that people can find the website, and it seems that current efforts in this area are effective.
During the first fifty days of the Learning Launch, four people completed the survey
being used to evaluate the site, with most people saying the site was user friendly and that they
were either likely to revisit the site or will possibly revisit the site. Additional information about
survey data gathered in the first fifty days of the Learning Launch can be found in the Evaluation
section of this paper. It is important to note the Learning Launch phase of this project is not
complete. Further feedback will inform implementation. The success of the Learning Launch so
far shows that this project is implementation ready.
Budget
As seen in Appendix G, the two-year budget for Chronically Informed is comprehensive
and includes a one-time start-up donation from an anonymous donor. This donation has been
agreed upon previously, although the amount is being finalized. As soon as Chronically
Informed is under the umbrella of CCC, therefore having non-profit status, the donation will be
made. In Appendix G, the start-up donation has been estimated at $20,000 and included in the

25
individual donor line item. A start-up campaign will likely occur in the Fall of 2024. The hope is
to collect $250 from a number of individual donors, engaging the community and making
Chronically Informed more attractive to grant funders.
The expenses in the budget are estimates based on previous expenses and expected
expenses. Items like travel, room, and board at conferences may need to be cut based on funding.
The goal is to be able to attend conferences, like the Shared Risk and Protective Factors
Conference that Chronically Informed presented at in May 2024, to not only promote the work of
the project but also to expand the project and reach new partners.
Fund Development Plan
Chronically Informed will soon have 501(c)3 status under the umbrella of CCC’s work.
This will allow for the raising of funds from private donors who will benefit from donating to a
non-profit, as well as the chance to apply for grants and other sources of support. One private
donor has already committed to making a one-time donation to get the project off the ground,
and an advocacy group in the community has suggested that leveraging the work of Chronically
Informed with its own work would be useful when applying for grant funding.
Chronically Informed will also be seeking funding through grants on its own. After initial
discussions with CCC, it seems as though focusing on smaller, easier to obtain grants will be the
first step. Looking into pharmaceutical company grants and health insurance company
foundation grants will be a starting place, as these sources of funding tend to require less
reporting and offer less restricted funds. It will also be necessary to look into local sources of
funding and reach out to advocacy agencies to see if they would be willing to financially support
the efforts of Chronically Informed.

26
Marketing and Branding
From the beginning, Chronically Informed has worked to create a brand and presence on
social media. The project has a Linktree account (https://linktr.ee/chronically.informed) that
connects visitors to the website, survey, and social media accounts. These social media accounts
include accounts on Instagram (@chronically.informed), Facebook
https://www.facebook.com/ChronicallyInformedFB/), LinkedIn
(www.linkedin.com/company/chronicallyinformed), and YouTube (@chronically.informed),
with the goal of posting regularly to build up content and reach followers. Followers are
encouraged via posts to visit the website. A meeting was held with a social media/brand expert to
increase knowledge and make better use of social media. A small amount of money was spent on
Meta ads when the Learning Launch first began, leading to increased traffic and interactions with
followers on Instagram and Facebook.
For in-person interactions, business cards were created with contact information for
Chronically Informed. In-person marketing has taken place at Chronic Disease Awareness Day
at the Colorado State Capitol, CCC’s Annual Meeting, and at a session dedicated to Chronically
Informed at the Shared Risk and Protective Factors Conference at the end of May 2024. Efforts
will continue to be made to do outreach in person to increase website traffic and gather patient
stories through video.
Other Implementation Considerations
Other progress on Chronically Informed outside of the prototyping, piloting, and
Learning Launch process has been made. The partnership with CCC will be monumentally
helpful to the continued development of Chronically Informed. Also, to protect the work being

27
done on this project, the paperwork to trademark Chronically Informed was submitted to the
United Stated Patent and Trademark Office in February 2024.
IX. Evaluation Plan
Measuring Social Change/Impact
To measure the impact of the project, two main strategies will be used. As previously
mentioned, the first strategy will be to use report information from the website design tools used
to create the site. The reports include data about how many visitors visit the site, what pages they
visit, and what percentage of visitors return to the website. Also included in the reports is
information about how people access the site, including whether they visited the site through a
Meta ad, social media link, Google search engine, or direct web address. This data is incredibly
helpful to analyze outputs.
To learn about people’s experiences using the website, a self-select Qualtrics survey is
linked to multiple buttons on the site. The survey includes both quantitative and qualitative
methods of data gathering to measure outcomes. The goal is to gather feedback directly from
those accessing Chronically Informed. So far, a small number of people have gone to the survey,
and an even smaller number have taken it. This issue is addressed later in this section.
Success will be measured in two ways. The first measure will be an increasing percentage
of visitors returning to the website. This proxy measure will show that people are finding the site
to be useful and returning to the site to access more content. Assessing this measure will take
time as more content is added, creating a draw for people to return to the site. In the first fifty
days that patient videos were up on the site, 5.2% of visitors returned to the site more than once.
While this return rate is not necessarily low, as more content is added this percentage should
remain consistent or increase.

28
The second measure will be to use the Qualtrics survey data to determine whether people
are learning to better partner with their providers. Again, collecting this data will take time. As
was previously mentioned, in the first fifty days that patient videos were shared on the site, only
four people had completed the survey. This survey response rate is low. The hope is that a larger
number of people will take the survey after more videos are posted. With an increase in content
being available, visitors will be able to offer feedback on a wider variety of information.
It is not always easy to get people to take a survey on a website. Efforts are being made to
increase survey participation. There is the possibility that CCC could include information on how
to access the survey when sharing information about Chronically Informed in future
communications with members. A slide dedicated solely to encouraging people to take the
survey was also added to the presentation used at the Shared Risk and Protective Factors
Conference in May 2024. The slide focused on the community participation needed to make the
project successful. Social media has been used to ask people to take the survey. A plan is in place
to create more of these posts and track whether this impacts survey participation. Linktree is
being used to let people know about the survey as well. A link has been added to Chronically
Informed’s Linktree that is dedicated to the survey, which will encourage people to take it.
Finally, for in-person events, such as the kickoff event projected to take place in the Fall of 2024,
a Quick Response (QR) code has been created that will lead people directly to the survey. The
use of this QR code will allow people, in the moment, to access the survey and give feedback.
The goal is to use these new methods to encourage people to take the evaluation survey, leading
to increased feedback that is necessary to evaluate and improve the website.
Stakeholders have reported that the survey is too long, and that people do not want to
take long surveys. Patients are tired of surveys and would prefer a more succinct tool for

29
evaluating the project. This feedback will be taken into consideration when the project is
implemented. As stakeholders have recommended, it will likely be necessary to shorten the
survey and focus on gathering data that is most important to understanding if the website is
meeting its goals. The lengthy portion of the survey that gathers demographic information will
be a good place to start removing questions that are not helpful in determining if the site is
useful. The hope is that if the survey is shorter and focuses on the most important data needed to
evaluate the site that more people will take it.
Data Collection Plan
Data will be collected from the previously named sources. Wix, the website design tool
used to create Chronically Informed, provides data based on site usage that is useful. The
Qualtrics survey will also be used to gather anonymous data from people who access Chronically
Informed and self-select to take the survey.
Communication Plan
After data collection from the Learning Launch is finalized, a summary of the results will
be shared with stakeholders at both in-person meetings and on social media. At this time,
changes may be made to the Chronically Informed website to improve outcomes and prepare for
implementation. It is crucial for stakeholders to know whether or not Chronically Informed is
meeting its goals. See Appendix H for a full description of the Communication Plan.
X. Challenges/Limitations
The major challenges faced by this project are difficulty getting people to take the
evaluation survey, funding the project, and the ongoing need for volunteers to make videos. The
challenges that exist with getting people to take the evaluation survey were discussed in the
Evaluation section of this paper. Funding is challenging because most of the cost of running

30
Chronically Informed is administrative. It is often difficult to be awarded grant funding that pays
for administrative costs. Being creative about where to apply for funding and engaging
individual donors will be crucial to funding the project long-term.
It will also be challenging to continue to find people to make videos for the project.
Currently, videos have only been collected from patients in Colorado. The hope is that by
expanding the project to include the rest of the United States, more patients will be engaged and
willing to submit videos. There have been patients who want to share their stories but are not
comfortable making the videos themselves. A plan is in place to offer support to people who
wish to make videos but cannot do it on their own. There is also the possibility that providers
could make videos for Phase Two of the project, depending on what level stakeholders decide to
include providers in content creation.
XI. Conclusion and Implications
Chronically Informed is an innovative project dedicated to improving the lives of chronic
illness patients and to Closing the Health Gap. This project started in Colorado but will soon
scale to include the rest of the United States, leading to widespread social change and the chance
to impact patient care in a way that has never been done before. By creating hope, helping
patients partner with providers, and improving healthcare for patients, Chronically Informed is
changing lives.
Lessons Learned
Using design thinking, this process included stakeholders in every part of project
development. Originally, Chronically Informed was going to be a toolkit. The goal was to help
patients learn about navigating the medical system through access to written information. It was
immediately clear that this was not what patients wanted or needed. From the first meeting with

31
a stakeholder, it was suggested that both videos and written material be used to share experiences
from other patients. Stakeholders wanted to know what had worked for others, and they needed
hope. It was obvious from the very beginning that honing in on what stakeholders dreamed
Chronically Informed could be is what would make it successful. The result is a project that was
born of stakeholder frustration and knowledge. Without the ongoing help of the stakeholders and
their dedication to the project, Chronically Informed would not exist as it does today, and it
certainly would not be the innovative project that is changing lives as this is being written.
Implications for Practice and Future Use
Social Work as a practice is often viewed as a one-on-one endeavor, focusing on micro
change. This project does not fit into that box. This macro solution is the epitome of what Social
Work practice can look like on a large scale. Chronically Informed creates an opportunity for
Social Work to use technology to create social change. It shifts Social Work to a new era, an era
that leverages the power of social movements and the values of social workers to create a new
frontier of practice.
One of the most exciting aspects of Chronically Informed is the ability to scale the
project and the fact that multiple phases of the project are planned. The project that exists now is
only the beginning of what is possible. As Chronically Informed grows, so will the number of
people who will know that it is possible to have hope, it is possible to be an active partner in
their own treatment, and it is possible to have access to better healthcare. Chronically Informed
can and will make these things possible with continued input from stakeholders and community
partnerships that sustain the project.

32
Action Plan
This project has done a Learning Launch. The next step is to officially implement Phase
One of the project. This next step will be taken in conjunction with the work being done with
CCC. There are tentative plans for a kick-off event in the Fall of 2024 that would introduce
Chronically Informed to the in-person community in the Denver Metro area. This kick-off event
would announce the official partnership with CCC and the project’s new 501(c)3 status, as well
as give patients the opportunity to share their stories. It would also be the official start to
implementing the project. So much work has gone into creating Chronically Informed. The
future is incredibly bright for this project, and, more importantly, there is now more hope for
patients with chronic illness.

33
References
Ahmadi, F., Khodayarifard, M., Rabbani, M., Zandi, S., & Sabzevari, M. (2022). Existential
meaning-making coping in Iran: A qualitative study among patients with cancer. Social
Sciences, 11(2), 80. https://doi.org/10.3390/socsci11020080
Center for Disease Control. (2022, July 21). About Chronic Diseases.
https://www.cdc.gov/chronicdisease/about/index.htm
Chaudoir, S. R. (2022). Multiple stigmas and magnitudes of illness symptoms: Who bears the
most burden? Stigma and Health. https://doi.org/10.1037/sah0000405
Chronic Care Collaborative. (n.d.). Retrieved May 23, 2024, from
https://www.chroniccarecollaborative.org/
Close the Health Gap-Grand Challenges for Social Work. (2018).
https://grandchallengesforsocialwork.org/wp-content/uploads/2015/12/180604-GChealth-gap.pdf
Dalen, J. E., & Alpert, J. S. (2017). Concierge medicine is here and growing!! The American
Journal of Medicine, 130(8), 880–881. https://doi.org/10.1016/j.amjmed.2017.03.031
Dattilo, T. M., Roberts, C. M., Traino, K. A., Bakula, D. M., Fisher, R., Basile, N. L., Chaney, J.
M., & Mullins, L. L. (2022). Illness stigma, health anxiety, illness intrusiveness, and
depressive symptoms in adolescents and young adults: A path model. Stigma and Health,
7(3), 311–317. https://doi.org/10.1037/sah0000390

34
Earnshaw, V. A., & Quinn, D. M. (2012). The impact of stigma in healthcare on people living
with chronic illnesses. Journal of Health Psychology, 17(2), 157–168.
https://doi.org/10.1177/1359105311414952
Eassey, D., Reddel, H. K., Ryan, K., & Smith, L. (2020). ‘It is like learning how to live all over
again’ A systematic review of people’s experiences of living with a chronic illness from a
self-determination theory perspective. Health Psychology and Behavioral Medicine, 8(1),
270–291. https://doi.org/10.1080/21642850.2020.1794879
Facebook. (n.d.). Retrieved September 21, 2023, from
https://www.facebook.com/groups/913067132123338
Forestier, B., Anthoine, E., Reguiai, Z., Fohrer, C., & Blanchin, M. (2019). A systematic review
of dimensions evaluating patient experience in chronic illness. Health and Quality of Life
Outcomes, 17. https://doi.org/10.1186/s12955-019-1084-2
Fox, S., & Chesla, C. (2008). Living with chronic illness: A phenomenological study of the
health effects of the patient–provider relationship. Journal of the American Academy of
Nurse Practitioners, 20(3), 109–117. https://doi.org/10.1111/j.1745-7599.2007.00295.x
Furlotte, C., & Schwartz, K. (2017). Mental health experiences of older adults living with HIV:
Uncertainty, stigma, and approaches to resilience. Canadian Journal on Aging, 36(2),
125–140. https://doi.org/10.1017/S0714980817000022
Goldberg, D. S. (2017). On stigma & health. The Journal of Law, Medicine & Ethics, 45(4),
475–483. https://doi.org/10.1177/1073110517750581

35
Hirschman, K. B., Shaid, E., McCauley, K., Pauly, M. V., & Naylor, M. D. (2015). Continuity of
care: The transitional care model. Online Journal of Issues in Nursing, 20(3), 13–27.
https://doi.org/10.3912/OJIN.Vol20No03Man01
Huff, C. (2015). Direct primary care: Concierge care for the masses. Health Affairs, 34(12),
2016–2019. https://doi.org/10.1377/hlthaff.2015.1281
Ironside, P. M., Scheckel, M., Wessels, C., Bailey, M. E., Powers, S., & Seeley, D. K. (2003).
Experiencing chronic illness: Cocreating new understandings. Qualitative Health
Research, 13(2), 171–183. https://doi.org/10.1177/1049732302239597
Joyce, K., & Jeske, M. (2019). Revisiting the sick role: Performing regimes of patienthood in the
21st Century. Sociological Viewpoints, 33(1), 70–90.
https://doi.org/10.26908/3312019_016
Lagu, T., Haywood, C., Reimold, K., DeJong, C., Walker Sterling, R., & Iezzoni, L. I. (2022). ‘I
am not the doctor for you’: Physicians’ attitudes about caring for people with disabilities.
Health Affairs, 41(10), 1387–1395. https://doi.org/10.1377/hlthaff.2022.00475
Kanter, E., Bevan, J. L., & Dorros, S. M. (2019). The Use of Online Support Groups to Seek
Information about Chronic Illness: Applying the Theory of Motivated Information
Management. Communication Quarterly, 67(1), 100–121.
https://doi.org/10.1080/01463373.2018.1539406
Kim, J.-N., & Lee, S. (2014). Communication and Cybercoping: Coping with Chronic Illness
Through Communicative Action in Online Support Networks. Journal of Health
Communication, 19(7), 775–794. https://doi.org/10.1080/10810730.2013.864724

36
Lebel, S., Mutsaers, B., Tomei, C., Leclair, C. S., Jones, G., Petricone-Westwood, D.,
Rutkowski, N., Ta, V., Trudel, G., Laflamme, S. Z., Lavigne, A.-A., & Dinkel, A. (2020).
Health anxiety and illness-related fears across diverse chronic illnesses: A systematic
review on conceptualization, measurement, prevalence, course, and correlates. PLOS
ONE, 15(7), e0234124. https://doi.org/10.1371/journal.pone.0234124
Lee, A. A., James, A. S., & Hunleth, J. M. (2020). Waiting for care: Chronic illness and health
system uncertainties in the United States. Social Science & Medicine, 264, 113296.
https://doi.org/10.1016/j.socscimed.2020.113296
Liedtka, J., Ogilvie, T., & Brozenske, R. (2019). The designing for growth field book: A step-bystep project guide.
Maier, S. F., & Seligman, M. E. (1976). Learned helplessness: Theory and evidence. Journal of
Experimental Psychology: General, 105(1), 3–46. https://doi.org/10.1037/0096-
3445.105.1.3
McManimen, S., McClellan, D., Stoothoff, J., Gleason, K., & Jason, L. A. (2019). Dismissing
chronic illness: A qualitative analysis of negative health care experiences. Health Care
for Women International, 40(3), 241–258.
https://doi.org/10.1080/07399332.2018.1521811
Monaghan, L. F., & Gabe, J. (2019). Managing stigma: Young people, asthma, and the politics
of chronic illness. Qualitative Health Research, 29(13), 1877–1889.
https://doi.org/10.1177/1049732318808521

37
Morkisch, N., Upegui-Arango, L. D., Cardona, M. I., van den Heuvel, D., Rimmele, M., Sieber,
C. C., & Freiberger, E. (2020). Components of the transitional care model (TCM) to
reduce readmission in geriatric patients: A systematic review. BMC Geriatrics, 20(1),
345. https://doi.org/10.1186/s12877-020-01747-w
O’Donnell, A. T., & Habenicht, A. E. (2022). Stigma is associated with illness self-concept in
individuals with concealable chronic illnesses. British Journal of Health Psychology,
27(1), 136–158. https://doi.org/10.1111/bjhp.12534
Ogilvie, T., & Liedtka, J. (2011). Designing for growth: A design thinking toolkit for managers.
Petkovic, J., Riddle, A., Akl, E. A., Khabsa, J., Lytvyn, L., Atwere, P., Campbell, P., Chalkidou,
K., Chang, S. M., Crowe, S., Dans, L., Jardali, F. E., Ghersi, D., Graham, I. D., Grant, S.,
Greer-Smith, R., Guise, J.-M., Hazlewood, G., Jull, J., … Tugwell, P. (2020). Protocol
for the development of guidance for stakeholder engagement in health and healthcare
guideline development and implementation. Systematic Reviews, 9(1), 21.
https://doi.org/10.1186/s13643-020-1272-5
Rassart, J., Oris, L., Prikken, S., Goethals, E. R., Raymaekers, K., Weets, I., Moons, P., &
Luyckx, K. (2021). Illness identity and adjusting to type I diabetes: A four-wave
longitudinal study. Health Psychology, 40(5), 326–336.
https://doi.org/10.1037/hea0001063
Rauch, M., Bundscherer-Meierhofer, K., Loew, T. H., & Leinberger, und B. (2022). Design of
an app using the technique of “Slow-Paced Breathing” for the self-regulation for students
during the coronavirus disease pandemic: A digital stress-regulation program for students

38
in grades 6 – 8. Kindheit Und Entwicklung, 31(4), 229–244. https://doi.org/10.1026/0942-
5403/a000394
Read the Principles. (n.d.). Design Justice Network. Retrieved May 21, 2024, from
https://designjustice.org/read-the-principles
Robinson, M. A., Irang, K., Orion, M., & Washington, T. (2020). The effects of hopelessness on
chronic disease among African Americans and Caribbean Blacks: Findings from the
National Survey of American Life (NSAL). Community Mental Health Journal, 56(4),
753–759. https://doi.org/10.1007/s10597-019-00536-z
Self-Efficacy: Bandura’s Theory of Motivation In Psychology. (2022, November 3).
https://www.simplypsychology.org/self-efficacy.html
Shay, J. (2023, Fall Semester). Chronically Informed: Providing Hope and Empowering Those
with Chronic Illness [Capstone Project Proposal, SOWK 725a]. Doctor of Social Work
Program, University of Southern California, Los, Angeles, CA.
Shay, J. (2023, Summer Semester). Struggle and Experience: Living with Chronic Illness
[Assignment 3: Final Paper, SOWK 790b Research]. Doctor of Social Work Program,
University of Southern California, Los, Angeles, CA.
Snyder, C. R. (2002). Hope theory: Rainbows in the mind. Psychological Inquiry, 13(4), 249–
275. https://doi.org/10.1207/S15327965PLI1304_01
Take Your Power Back. (n.d.). The Fat Doctor. Retrieved September 21, 2023, from
https://www.fatdoctor.co.uk/course/

39
The Mighty. Making health about people. (n.d.). Retrieved May 23, 2024, from
https://themighty.com/
U.S. Census Bureau QuickFacts: United States. (n.d.). Retrieved April 2, 2023, from
https://www.census.gov/quickfacts/fact/table/US/PST045222
Van Spall, H. G. C., Rahman, T., Mytton, O., Ramasundarahettige, C., Ibrahim, Q., Kabali, C.,
Coppens, M., Brian Haynes, R., & Connolly, S. (2017). Comparative effectiveness of
transitional care services in patients discharged from the hospital with heart failure: A
systematic review and network meta-analysis. European Journal of Heart Failure,
19(11), 1427–1443. https://doi.org/10.1002/ejhf.765
Verhaak, P. F. M., Heijmans, M. J. W. M., Peters, L., & Rijken, M. (2005). Chronic disease and
mental disorder. Social Science & Medicine, 60(4), 789–797.
https://doi.org/10.1016/j.socscimed.2004.06.012
Watson, K. B., Carlson, S. A., Loustalot, F., Town, M., Eke, P. I., Thomas, C. W., & Greenlund,
K. J. (2022). Chronic conditions among adults aged 18─34 years—United States, 2019.
MMWR. Morbidity and Mortality Weekly Report, 71.
https://doi.org/10.15585/mmwr.mm7130a3
Whittle, H. J., Palar, K., Ranadive, N. A., Turan, J. M., Kushel, M., & Weiser, S. D. (2017).
“The land of the sick and the land of the healthy”: Disability, bureaucracy, and stigma
among people living with poverty and chronic illness in the United States. Social Science
& Medicine, 190, 181–189. https://doi.org/10.1016/j.socscimed.2017.08.031

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Appendix A
Infographic

41
Appendix B
Design Criteria
Criteria Wider Opportunity Space
Must -Help patients navigate the
medical system
-Give chronic illness
patients a voice
-Provide training to
practitioners
-Be evidence based
To create a training
opportunity for
practitioners and give
patients a voice, chronic
illness patients will need to
be given the opportunities
to share their stories of
success and practical
techniques for navigating
the medical system.
Could -Exist online
-Work within the current
medical system
-Take place in medical
offices
-Take place in formal
education
While this could be a
project that exists solely
online, there is also
opportunity to work within
educational spaces. This
could be used in patient
care, nursing training,
and/or medical school.
Should -Create hope for patients
-Supplement medical school
education
-Provide training that is
useful and practical
The videos shared by
patients should create hope
for other patients and open
the door to train providers.
Won’t -Exploit chronic illness
patients
-Replace traditional
medical education
It is necessary that this
project not exploit the
patients involved. It will be
crucial to have oversight.
The goal of the project is
not to replace other medical
training, but to supplement
it.

42
Appendix C
Stakeholder Low-Fidelity Prototype Session Feedback

43
Appendix D
Revised Logic Model
Inputs
• Staff time
• Research
• Patients who
will create
videos
• Domains
• Website
design tools
• Social media
accounts
• Social media
content
creation tools
• E-sign
software for
video releases
• Funding:
individual
donors, grants
Activites
• Build
partnerships
• Create a
website
• Develop
videos
• Create social
media
branding
Outputs
• Links to
outside
resources
• Written video
descriptions
• 10 patient-led
videos
• Social media
branding
Short-Term
Outcomes
• Increased
patient
knowledge
• Increased
patient hope
• Increased
patient skills
Intermediate
Outcomes
• Patients are
more able to
access
resources
• Patients are
more likely to
advocate for
themselves
• Patients are
more able to
partner with
providers
Long-Term
Outcomes
• Better
healthcare for
patients
• Providers and
patients work
as partners

44
Appendix E
Implementation Timeline

45
Appendix F
Website Visitors in the First Fifty Days
0 50 100 150 200 250
Homepage
Videos
About
Unique Visitor Counts for the
Top Three Pages Viewed on Website

46
Percentage of Return Visitors to the Site

47
Top Traffic Sources

48
Appendix G
Chronically Informed 2-Year Budget
Category
Year 1 – 2024
(Sept-Dec) Year 2 - 2025 Comments
REVENUE
Individual Donors 20,500.00 one time start-up donations
In-Kind Donations 12,000.00 contractor will donate time
for first year
Grants 25,000.00
Total REVENUE 32,500.00 25,000.00
EXPENSES
Contractors (Independent) 12,000.00 36,000.00
contractor time is an in-kind
donation for first year
Fiscal Sponsor Fee 1,435.00 1,750.00
7% of revenue (not
including in-kind donations)
Vimeo 240.00
Domain: chronicallyinformed.com 13.00
Domain: chronicallyinformed.org 13.00
Wix 300.00
Google One Storage 21.00
Email:
jessie@chronicallyinformed.org 72.00
Conference Registration (3
Conferences) 1,000.00
Conference Travel (3 Conferences) 1,500.00
Conference Lodging (3 Conferences) 3,000.00
Total EXPENSES 13,435.00 43,909.00
SURPLUS/DEFICIT 19,065.00 156.00

49
Appendix H
Communication Plan
Three main stakeholder groups will be included in the Communication Plan. Stakeholders
will receive information about the progress of the project and data based on their involvement
with Chronically Informed. These groups include: 1) Stakeholders who have given feedback on
the project, 2) CCC, and 3) Funders.
Stakeholders who have been involved with the design process of this project will be sent
emails with information that will increase awareness and understanding of the progress of the
project. They will be given a project overview and status reports when milestones have been
reached for the project. This was done at the time of the Learning Launch and will be done at the
time of Phase One implementation. This will include data that will show whether Chronically
Informed is meeting its goals, such as graphs presenting how the site is being used and feedback
from people who take the survey. This information will be a high-level summary of how the
project is going.
CCC is an integral part of this project. After the MOU has been signed between CCC and
Chronically Informed, this partnership will be even more formalized. Monthly meetings will be
held with CCC to provide updates on the project that will include a project overview, status
reports, outcome measures, and, in some cases, final outcomes. These updates will seek to gain
commitment and approval from CCC. CCC will then share a summary of this information with
the collaborative members when it is appropriate. Chronically Informed will attend CCC
meetings and share updates with members when necessary.
Finally, Chronically Informed will share a project overview with funders based on what
they wish to know. Individual donors might want very different information than a grant funder

50
might require. Information provided to funders will be tailored to meet their needs and
requirements. This could range between project overviews to outcome measures. This specific
aspect of the Communication Plan will be determined as new funders are added to the project.

Abstract (if available)

Abstract This paper describes Chronically Informed, a project that improves the lives of chronic illness patients. Almost 50 percent of people living in the United States live with chronic illness (Robinson et al., 2020), and according to the Chronic Care Collaborative, more than 60 percent of Coloradoans live with a chronic disease (Chronic Care Collaborative, n.d.). The experience is common and yet still misunderstood, and a wicked problem has been created by society’s lack of understanding of the patient experience. The pervasive nature of this wicked problem prevents chronic illness patients and providers from partnering in care. Chronically Informed is a website that showcases short-form videos for chronic illness patients, by chronic illness patients, with the goals of creating hope, helping patients partner with providers, and improving healthcare. The project will directly impact Social Work practice, expanding the reach of social workers by using technology to build skills and change the narrative for patients. It will also work to Close the Health Gap for patients with chronic illness (Close the Health Gap-Grand Challenges for Social Work, 2018). Chronically Informed began by focusing on patients in Colorado and plans to expand the project to include patients and providers in the rest of the United States. Living with chronic illness is not a unique experience. It is crucial that more work be done to better the lives of those living with chronic illness.
Keywords: Chronic Illness, patients, healthcare, social work

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Asset Metadata

Creator Shay, Jessie (author)

Core Title Chronically informed: hope for people with chronic illness

School Suzanne Dworak-Peck School of Social Work

Degree Doctor of Social Work

Degree Program Social Work

Degree Conferral Date 2024-08

Publication Date 07/26/2024

Defense Date 07/24/2024

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

Tag chronic illness,healthcare,OAI-PMH Harvest,Patients,social work

Format theses (aat)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Kay-Wicker, Robin (committee chair), Froelich, Sara (committee member), Schwartz, Sara (committee member)

Creator Email jashay@usc.edu,jessieanneshay@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC113998H4W

Unique identifier UC113998H4W

Identifier etd-ShayJessie-13291.pdf (filename)

Legacy Identifier etd-ShayJessie-13291

Document Type Capstone project

Format theses (aat)

Rights Shay, Jessie

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Repository Email cisadmin@lib.usc.edu