“Health Equity Rituals: A Case for the Ritual View of Communication in an Era of Precision

Medicine”

by
Samuel R. Mendez

A.B. Visual and Environmental Studies, Harvard University, 2014

Submitted to the Program in Comparative Media Studies/Writing in Partial Fulfillment of the

Requirements for the Degree of Master of Science in Comparative Media Studies
at the Massachusetts Institute of Technology

May 2020

© 2020 Samuel R. Mendez. All rights reserved.

The author hereby grants to MIT permission to reproduce and to distribute publicly paper and
electronic copies of this thesis document in whole or in part in any medium now known or
hereafter created.

Signature of Author:

Department of Comparative Media Studies/Writing

Certified by:

William Uricchio
Professor of Comparative Media Studies, MIT
Thesis Supervisor

Accepted by:

Eric Klopfer
Director of Graduate Studies for Comparative Media Studies

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 “Health Equity Rituals: A Case for the Ritual View of Communication in an Era of Precision
Medicine”

by

Samuel R. Mendez

Submitted to the Program in Comparative Media Studies/Writing on May 8, 2020 in Partial

Fulfillment of the Requirements for the Degree of Master of Science in Comparative Media
Studies at the Massachusetts Institute Of Technology.

ABSTRACT

This thesis explores the meaning and implications of a ritual view of communication in the field
of public health. This thesis uses the budding field of precision medicine to frame arguments and
discoveries, referring back to the Precision Medicine Initiative in chapter introductions,
conclusions, and illustrative examples throughout. The introduction presents the script for an
interactive online live stream performance summarizing this thesis. Chapter 1 highlights the
dominance of a transmission view of communication in public health, which tends to focus on
top-down transfer of knowledge from experts to general audiences. This chapter highlights the
limitations of such a view, especially when it comes to meeting the needs of medically
underserved communities. This chapter highlights the gaps that a ritual view of communication
could fill in public health research and practice. Chapter 2 further examines what a ritual view of
communication entails in public health, and how to conceive of it in relation to participatory
research frameworks. This chapter closes with the design of a conversational tool to help
academic-community partnerships employ a ritual view of communication on a project-level
scale. Chapter 3 describes the development of “A People’s Guide” community engagement
program, employing a ritual view of communication to reconfigure the social roles and power
dynamics in public health community engagement. This community engagement program uses
workshops and interviews with members of medically underserved communities to publish a
zine, which is then the basis of conversation in academic journal club workshops. This chapter
uses a developmental evaluation framework to inform the program development process and
suggest next steps that can be taken to develop this program further. Overall, this thesis employs
a combination of theory, applied media practices, educational field work, and design to highlight
the opportunities that a ritual view of communication presents to advance health equity.

Thesis Supervisor: William Uricchio

Title: Professor of Comparative Media Studies

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TABLE OF CONTENTS.

LIST OF FIGURES. ​(p. 6)

BIOGRAPHICAL NOTE. ​(p. 7)

ACKNOWLEDGEMENTS. ​(p. 8)

INTRODUCTION. ABSTRACT SPACE AND TIME. ​(p. 9)

✨ Abstract ✨ (p. 14)

● Who is this?
● What’s the big idea?
● What do I need to know?
The Show. (p. 16)
● The Rules.
● The Plays.

● 💩
Performance Scripts. (p.18)
“An honest check-in, more or less”
● 👏 “A Moment of Recognition for Barbara Israel”
● 🔊 “Ritual & Transmission”
● 📖 “A People’s Guide to Precision Medicine”
● 💻 “A PEOPLE’S GUIDE TO PRECISION MEDICINE: THE DEVELOPMENT AND
DESIGN OF A MEDIA-BASED COMMUNITY ENGAGEMENT PROGRAM,” or
“THE CONFERENCE I MADE THIS POSTER FOR GOT CANCELLED AND I
SPENT TOO MUCH TIME TURNING A GOOGLE SLIDE INTO A POSTER FOR NO
ONE TO SEE IT, SO GUESS WHO’S HOSTING A POP-UP POSTER SESSION~”
● 🔄 “A KALEIDOCYCLE!”
● 👀 “A zine”
● 💃 “HER Model of Community Engagement”
● 😺 “An excerpt from a summer workshop”
● 👽 “The Future of All of Us”
CHAPTER I. A LOOK AT THE LIMITS OF PUBLIC HEALTH COMMUNICATION
AS IT EXISTS TODAY. ​(p. 20)

I. A: Health communication in the US largely focuses on one-way transmissions of information.

(p. 33)
● I. A1: A “transmission view” of communication can work in tandem with a “ritual view”
in the field of public health. (p. 35)
● I. A2: The transmission view of communication dominates in US public health. ((p. 37)

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I. B: The dominance of the transmission view of communication limits the impact of public
health work in medically underserved communities. (p. 40)
● I. B1: A transmission view of communication ignores message receivers’ power. A ritual
view focuses on power dynamics. (p. 42)
● I. B2: A transmission view of communication ignores impactful feedback loops. A ritual
view examines how various actors shape the environment in which they interact. (p. 45)
● I. B3: A transmission view of communication ignores the political nature of public
health. A ritual view gives attention to the broader social contexts in which
communication takes place. (p. 48)

I. C: Conclusion. (p. 50)

CHAPTER II. A RITUAL-BASED TOOL FOR HEALTH EQUITY. ​(p. 61)

II. A: What Does a Ritual View of Communication Entail in Public Health? (p. 64)
● II. A1: What does a ritual view of communication imply for community engagement in
public health? (p. 66)
○ Definition. (p. 66)
○ Implications. (p. 68)
● II. A2: What are current approaches to reconfiguring research and community
engagement in public health? (p. 69)
○ Participatory Research Frameworks. (p. 70)
○ Implications for the Future. (p. 74)

II. B: What is the Health Equity Ritual Model of Community Engagement? (p. 76)
● II. B1: Tool 1. Papercraft Kaleidocycle. (p. 77)
○ Conceptual Design: 4-Phase Cycle (p. 78)
○ Physical Design: Conversational Tool (p. 86)
● II. B2: Tool 2. Zine. (p. 87)

II. C: Conclusion. (p. 91)

CHAPTER III. A PEOPLE’S GUIDE TO PRECISION MEDICINE. ​(p. 98)

III. A: Abstract. (p. 99)

● Aims. (p. 99)
● Methods. (p. 99)
● Evaluation. (p. 99)
● Results.(p. 100)
● Significance (p. 100)

IIII. B: Design Brief. (p. 100)

● IIII. B1: Background. (p. 100)
○ Medically Underserved Communities. (p. 101)
○ Sources of Knowledge. (p. 102)
○ Media Interventions. (p. 103)

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 ● III. B2: Methods. (p. 103)
○ Context. (p. 104)
○ Research Ethics. (p. 104)
○ Implementation Methods. (p. 105)
○ Developmental Evaluation. (p. 106)
○ Data Collection and Analysis Methods. (p. 107)
○ Key Developments. (p. 108)
● III. B3: Results. (p. 110)
○ Logic Model. (p. 110)
○ Network Map. (p. 114)
● III. B4: Discussion. (p. 116)

CHAPTER IV. CONCLUSION.

APPENDIX A: “A PEOPLE’S GUIDE TO PRECISION MEDICINE” ZINE ARTICLES.

(p. 127)

APPENDIX B: “A PEOPLE’S GUIDE TO PRECISION MEDICINE,” SUBMISSION

GUIDE. ​(p. 187)

APPENDIX C: HER MODEL OF COMMUNITY ENGAGEMENT (PRINTABLE). ​(p.

194)

APPENDIX D: “A PEOPLE’S GUIDE TO PRECISION MEDICINE” JOURNAL CLUB

WORKSHOP MATERIALS.​ (p. 203)

APPENDIX E: " ✨ Abstract ✨" SCREENSHOTS. ​(p. 225)

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LIST OF FIGURES.

1. Header image from an information brochure for ​All of Us.​ (p. 28)
2. Two frames from an ​All of Us​ intro video. (p. 29)
3. A picture from a design fiction workshop I ran with 2019 ChicagoCHEC Research
Fellows. (p. 32)
4. Illustration of the difference between the transmission view (left) and ritual view (right) of
communication. (p. 36)
5. Diagram of the Health Belief Model from Janz and Becker. (p. 37)
6. A composite of the front covers of the All of Us brochures intended for various
populations. (p. 40)
7. Visual representation of Stuart Hall’s model of encoding/decoding. (p. 43)
8. A still from “The Future of Health Begins with All of Us: A Conversation with the NIH
Director.” (p. 61)
9. A model of action research from Greenwood and Levin. (p. 70)
10. A model of the factors influencing CBPR projects from Wallerstein et al. (p. 71)
11. A model for conceptualizing citizen science from Jordan et al. (p. 72)
12. A model of co-design compared to classical design processes, from Sanders and Stappers.
(p. 73)
13. Kaleidocycle portion of the HER model of community engagement. (p. 78)
14. The “Planning” phase of the HER model of community engagement. (p. 79)
15. The “Acting” phase of the HER model of community engagement. (p. 81)
16. The “Watching” phase of the HER model of community engagement. (p. 82)
17. The “Reacting” phase of the HER model of community engagement. (p. 84)
18. A demonstration of the HER model’s kaleidocycle rotating around itself. (p. 87)
19. Zine portion of the HER model of community engagement. (p. 88)
20. The front and back covers of the HER model of community engagement zine. (p. 88)
21. Pages 1 and 2 of the HER model zine. (p. 89)
22. The pause-and-reflect spread of the HER model zine. (p. 89)
23. The final two pages of the HER model zine. (p. 90)
24. Logic model for the “People’s Guide” community engagement program. (p. 111)
25. Network map for the “People’s Guide” community engagement program. (p. 115)
26. A poorly drawn simulation of a Chicago health data visualization. (p 122)
27. The rough outline of pretty much any data visualization of a health issue in Chicago. (p.
123)
28. ____________ (p.124)

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BIOGRAPHICAL NOTE.

My experience growing up in a Mexican-American community in Chicago initially informed my

interest in health equity. My college education in media arts combined with research experience
in the Viswanath Lab at the Harvard School of Public Health drew me to develop my own
questions about how creative arts could be used to advance health equity. Between college
graduation in 2014 and starting my master’s program at MIT in 2018, I worked as a video project
director internationally, then as a research assistant in the Simon Lab at Northwestern University
Feinberg School of Medicine. These experiences made me curious about how to intervene in the
research infrastructure that makes community-based research difficult to get funded and taken as
seriously as biomedical research. That path of questioning led me to create this thesis. I am
moving on from this master’s thesis to a PhD program in Population Health Sciences at the
Harvard T.H. Chan School of Public Health. There I aim to develop the methods of this thesis
into the start of a line of public health research.

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ACKNOWLEDGEMENTS.

First I’d like to thank my advisors: Dayna Cunningham at the MIT Department of Urban Studies
and Planning, K. Viswanath at the Harvard T.H. Chan School of Public Health, and William
Uricchio at MIT’s Comparative Media Studies program. This work would not have been possible
without the lenses you offered me to view my work.

I’d also like to thank the members of the Simon Lab at the Northwestern University Feinberg
School of Medicine and the ChicagoCHEC 2019 summer fellows. The development of chapter 3
of this thesis would not have been possible without your participation.

Finally, I’d like to thank my family for raising me to be the person I am today. My classmates at
MIT for providing support throughout this process. My partner Xiaogao and all of my friends,
colleagues, and acquaintances who humored me as I talked about these ideas incessantly for
months.

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 INTRODUCTION ABSTRACT TIME AND SPACE.
In case you weren’t aware, I’m writing this in May 2020 in the US, and time has recently
stopped working. It’s slowed down and sped up, without warning, somehow both at once. It’s the
same day for a minute, the same a month for a year, and the same hour for a week. Tell me how
that math works out. Oh, and how could I forget? The world turned upside down—my eyes are
still having major trouble adjusting.
I have more time to cook now, but with these eyes, going to the grocery store is harder
than ever. Going anywhere is harder than ever, really. And, ironically, so is staying in. It seems I
am having trouble navigating this world now that right is left and up is down. See, when light
travels through the lens that is my eye, the journey it takes causes images of the world to hit my
retina upside down. My brain flips that image upside down again in order to make sense of it in
relation to all the other information it’s taking in. So, scratch that. It’s 2020 and my eyes are fine.
It’s my brain that’s having trouble adjusting. By my calculations, the upside-down image of an
upside-down image of an upside-down world is the same picture my brain has always worked
tirelessly to fix. After a lifetime of editing my view of the world to make sense of it in real time,
seeing everything so plainly is a shock to the system... especially when real time doesn’t seem to
exist anymore. But maybe this shouldn’t be such a shock. As new as this situation is, I can’t help
but feel like I’ve been here before.
I first learned the term “health disparity” when I was 17. I was in an internship program
for high schoolers from underrepresented backgrounds in cancer research. A presenter was
telling my cohort about the unjust inequalities in health in the US. There was a word for this.
People with less money and education having worse health. People living in different
neighborhoods having different life expectancies. People of different races having different
relationships with the medical system. I grew up seeing the impacts of these disparities in my
own family. Someone had health insurance when they needed it, and someone else didn’t.
Someone had easy access to fresh foods and someone else didn’t. And there in front of me in that
internship was someone showing me proof that it’s not just my family. At 17, I thought the
solution was just to get the word out. The situation seemed so atrocious that obviously people
just didn’t know the scope of the problem. If everyone knew, then obviously we could find a

9
solution. Obviously no one could look at the graphs that a scientist just showed me and then do
nothing about it. As it turns out, the link between information, trust, and collective action is not a
straight line.
I was 18 when I learned that the term “public health” described a whole field of research.
I was interviewing for a spot in another internship program for college students from
underrepresented backgrounds in cancer research. I knew I didn’t want to spend my days in a
lab, working with clumps of cells that could produce information that might lead to a medicine
10 years down the line if I was lucky. I wanted to help improve disadvantaged groups’
opportunities for health in daily life, and I knew that clinical research could help improve the
medical system. So, I tried to let the interviewers know about my interest in clinical research and
health disparities. I wanted them to see that I had focus and motivation to perform well if I were
just placed in the right lab. The interviewers asked me about the possibility of working in a
public health lab. Relying heavily on context clues to guide me through that conversation, I said
that would be great. I ended up in a public health communication lab, spending the summer
examining social media posts by community-based organizations. During my interview, I hadn’t
known that was possible.
Turning 18, moving from Chicago to the East Coast, and learning about the theoretical
existence of health disparities from inside the privileged gates of Harvard was one long “Was my
world upside-down this whole time?” moment for me. I think it was manageable, though,
because time was still working the way I needed it to. It wouldn’t stop until I was 25.
About two weeks after my 25th birthday, I was helping plan the funeral for one of my
best friends from college. The 5 months before that were filled with measurements and statistics
and big words from medical professionals that couldn’t tell us the answer to the only question we
cared about: what’s going to happen? Eventually, the answer came from inside my friend’s body,
and the battle metaphors no longer worked. The war was over. The clumps of sick cells won and
then died, along with all the non-sick cells whose fates were tied to them. What came next: a
surprise two-week stay in another state, a flash move-out from an apartment, phone calls to
government offices, dealing with finances, and weird meals. That week lasted a year, each day
flew by, and each hour was too long. At the intersection of the ripple effects of that breakdown in

10
time meeting the ripple effects of immigration was a mourning room full of 20-somethings who
grew up in the US meeting a handful of older adults who grew up in a different set of borders.
Now, that breakdown in time was wrapped inside another, like a Russian nesting doll.
Those same 5 months had previously come for my uncle, except his case ended up lasting for
actual calendar years, much to everyone’s surprise. The phone calls to government offices and
dealings with finances had come much earlier and lasted much longer, but they were preventing
the second wave of phone calls and finances that, for a while, almost seemed like they would
never come. Against all odds, my uncle was living while my friend was dying. Well, even in a
nested series of time loops, it turns out 5 months can’t last forever. About two weeks after my
26th birthday, my uncle left this world too. In a world like ours, time has a way of getting back
on its feet and marching forward, no matter what else happens. Bills need to be paid. Work needs
to be done. Holidays come, and the seasons change, and I end up moving from Chicago to the
East Coast again.
After time and space broke down again this year, I moved back to Chicago. And now
here I am trying to figure out how to exist in the US in May 2020. At some point, time will pass
and the seasons will change and I’ll move from Chicago to the East Coast again. As
unprecedented as this situation is, I can’t help but feel like I’ve been here before. Problems with
phone calls to government offices are in the news. People’s bodies give them answers before
medical professionals can. Weird meals are on social media. People who want answers to
questions that no one can answer stand outside of government halls, looking like they’re in the
middle of a war. And that metaphor still doesn’t work because their fates are tied to those of the
sick and the non-sick alike. Sudden move-outs and surprise two-week stays are the new normal.
Somehow even more tragically, so are funerals attended by only a handful of family members.
And who is bearing the brunt of this public health disaster? The same people that have
long carried the weight of this country’s history. The history that manifests in tired hearts and
tired lungs in 2020, and that manifested in those same tired organs I learned about when I was
17. But I know better now than I did when I was a teenager. I know that most people will
perceive the scientists trying to explain what’s going on. Some will understand what they have to

11
say. Some will trust what they have to say. Some will want to return to the ways of life that
brought us here anyway, but I truly don’t believe that describes most people in the US.
I’m familiar with a lazy critique of a fair amount of work that I look up to: you’re
preaching to the choir. A younger version of me would want to avoid this kind of work like the
plague. Now I know, however, that sometimes a choir needs a preacher and the preacher needs
the choir just as much in return. What are any of those community members without each other?
Every so often, they need to share in a ritual that signals to themselves and to the rest of the
world that they are not alone in trying to live by a certain set of values. Regularly performing the
ritual lets other people know where to find them and how to join in. We see these rituals play out
online, and we call them echo chambers. Now, I don’t know much about singing, but an echo
chamber sounds like the kind of space well-suited for a choir practice. (At the very least, it’s
better than a government office or a clinic.) Carrying out the ritual lets other people know where
to find them and how to join in. Again, I don’t know much about singing, but my guess is that if
you send a scientist to lecture at a choir, they’d be drowned out and ignored at best. At worst, the
scientist would become a nuisance getting in the way of the things that need to be done.
In May of 2020, it is stranger than ever to see the way that public health in the US relies
almost exclusively on government offices and scientists, and so little on the community leaders,
arts, and media that people turn to in their daily lives. In the year-and-a-half I had when time and
space worked the way I needed them to, I learned that I don’t want to spend my life telling
people that their image of the world is upside down. Instead, I want to work with others to create
an image of the world we want to see, and figure out how to get there. I don’t want to spend my
life broadcasting measurements and statistics and big words to people in the middle of choir
practice. Instead, I want to commune with others and bend time to our will.
Every day, through art, people make images of worlds that don’t exist and bend time to
their will. A performer can create a space where nothing else matters but that space they’re
creating on stage. An animator can string still moments into nonexistent lifeforms. A
documentary filmmaker can turn a decade into 90 minutes. Through art, personal stories and
feelings become generalizable, shared experiences that can help form a community. This
community, in turn, can be the engine of change that draws on the various kinds of knowledge

12
and expertise of its members to make a new world a reality. This is why I try my hardest to bring
my whole self to my work in public health. This is why I try to integrate art and design and
attention to aesthetics into my academic passions. I know I’m not alone, and I need to let other
people know how to find me. Together, we’ll do things that all the graphs, statistics, and big
words could never accomplish.

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✨ Abstract ✨
The following is the script for my thesis presentation, an interactive live-streaming
performance using a camera feed and screenshare of a custom-built website. See Appendix E for
screenshots of the performance. My hope is that this performance gave audience members a
general sense of the main ideas I am arguing for in my thesis. I also hope that they left the
performance with more questions about participatory research, health equity, and/or precision
medicine. I also hope that this experience was positive and entertaining, making these topics feel
approachable and relevant to their own life experiences. As such, I hope this script performs a
similar function in this thesis, providing the broad strokes of my ideas while sparking curiosity.

Who is this?
Hi. I’m Samuel R. Mendez. (I only use that name in writing. This might be the first time
I’ve ever said it out loud.)
This is the script for my presentation of my master’s thesis in Comparative Media Studies
at MIT. Its title is, “Health Equity Rituals: A Case for the Ritual View of Communication in an
Era of Precision Medicine.” In it, I experiment with various media as ways to offer insights into
public health topics. So, I want to try that here as well. Now let’s move onto the part where I tell
you what the big idea is.

What’s the big idea?

In my thesis, I spend many pages using many ways to support one big idea:
communication isn’t just about information, but also about social roles. And this has big
implications for health equity in the US. Especially in an era of precision medicine.
I use the word “ritual” to describe this view because I like the questions it raises. Who’s
at the table? How are they expected to act toward each other? Who’s in what roles? I think these
are important questions to ask in public health. Without them, I think US public health
researchers risk unintentionally reinforcing social roles that can harm medically underserved
communities.

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 So I’m 4 paragraphs in, and I recognize there’s already a lot going on. Let’s go over a
few key definitions so we’re a little closer to being on the same page.

What do I need to know?

I’m going to ask for some help in reading out these definitions to get us started. [Sam
calls on members of the audience to read these definitions aloud from the screen.]
Health Equity​. Health equity is social justice in health. It is justice in access to health
opportunities for members of historically disadvantaged groups ​(Braveman, 2014)​. It is the idea
that everyone should have the chance to live a healthy life as they see fit, no matter who they are.
Medically Underserved Community​: a group facing societal, economic, cultural, or
linguistic barriers to healthcare. This includes people experiencing homelessness, migrant
workers, undocumented immigrants, people with low incomes, people without health insurance,
people in geographically isolated areas, gender and sexual minorities, Indigenous communities,
people of color, and people with disabilities. This is an expansion of the definition of “medically
underserved populations” by the US Bureau of Health Workforce ​(2019)​.
Precision Medicine​. Precision medicine is a budding approach to medicine and disease
prevention. It uses data about a person’s genes, lifestyle, and environment to tailor health care.
(Lister Hill National Center for Biomedical Communications, 2020)​. As such, it depends on
large amounts of data from a large number of patients for analysis. Right now, the concept of
precision medicine is more of an aspiration than it is a specific technique.
Ritual Communication​. In public health, a ritual view of communication focuses on the
social structures that a communication process maintains. Communication maintains social
structures by outlining power dynamics, social roles, expectations, conflicts, and feedback loops.
This definition draws on the work of James Carey, Stuart Hall, and Nancy Fraser.
And now, onto the show.

15
The Show.

The Rules.
This show is called​ “​✨ ​Abstract ​✨​” (with an emphasis on the sparkle emojis). This ​is
not my thesis. It’s a weird online performance meant to share what I learned through the process
of making my thesis. Hopefully, it also paints me as someone who knows what they’re talking
about when it comes to health equity and public health community engagement.
This show is inspired by the work of The Chicago Neo-Futurists. As such, it’s made up of
10 short non-fiction plays that I will try to perform in 25 minutes. I don’t know what order these
plays will come in. I’m going to need your help for that, so stay on your toes.
There’s a lot going on, but hopefully things will become clearer as time goes on. And
with that, let’s start the timer. [Sam proceeds to call on a volunteer to decide which play to
perform first.]

The Plays.
● 💩 “An honest check-in, more or less”
● 👏 “A Moment of Recognition for Barbara Israel”
● 🔊 “Ritual and Transmission”
● 📖 “A People’s Guide to Precision Medicine”
● 💻 “A PEOPLE’S GUIDE TO PRECISION MEDICINE: THE DEVELOPMENT
AND DESIGN OF A MEDIA-BASED COMMUNITY ENGAGEMENT
PROGRAM,” or “THE CONFERENCE I MADE THIS POSTER FOR GOT
CANCELLED AND I SPENT TOO MUCH TIME TURNING A GOOGLE SLIDE
INTO A POSTER FOR NO ONE TO SEE IT, SO GUESS WHO’S HOSTING A
POP-UP POSTER SESSION~”
● 🔄 “A KALEIDOCYCLE!”
● 👀 “A zine”
● 💃 “HER Model of Community Engagement”
16
● 😺 “A taste of a summer workshop”
● 👽 “The Future of All of Us”

17
Performance Scripts.

💩 “An honest check-in, more or less”

This is a really weird time. There’s a pandemic going on. I’m living with a nagging
underlying fear for my family and for the community I grew up in. Yet somehow I’m still
working on my thesis and pouring hours upon hours upon hours into perfecting my virtual island
in Animal Crossing. I’m happy about the prospect of graduating this spring and excited about
starting a PhD program in public health in the fall.
I feel the need to be in public health now more than ever. The coronavirus is shining a
heartbreaking light on systemic issues. The burden of infection and death that black communities
across the country are bearing right now is the result of generations of injustice. The danger that
uninsured and food-insecure communities are facing right now is an escalation of risks they have
long been forced to take. I see the harsh reality of the state of health disparities in the US.
Yet I also see generosity, resilience, and advocacy that point to the path forward. One
day, the state of the US in 2020 will be a case study on the public health impacts of social
inequalities. One day I might even teach my future students about it. Even then I doubt I’ll be
able to talk about it without the visceral memory of bruising my shins against a shopping cart full
of boxes, in a drizzle, racing to the U-Haul on Main Street to lock my things away into storage
before it closed.
But that’s a little too long of an answer for, “How are you,” so these days I usually just
say, “Good,” and I think people get it.

👏 “A Moment of Recognition for Barbara Israel”

The idea of changing the social structures of research isn’t new. There are many
participatory research frameworks that do just that. One recognized framework in public health is
community-based participatory research (CBPR). CBPR centers long-term partnership with the
community being studied, from framing research questions to analyzing and sharing results. One

18
key CBPR scholar in public health is Barbara Israel at the University of Michigan. I draw on her
work a lot when I think about what a ritual view of communication can bring to public health.
One key characteristic of academic-community research partnerships is that they require
a lot of work that often falls outside of academic job titles and project evaluation metrics. This is
especially true when working with underserved communities. At a large scale, I worry that this
creates incentives to not work with medically underserved communities or to take a top-down
approach, working with community members as consultants.
I think incorporating a ritual view of communication into project planning and evaluation
within the National Institutes of Health can bring a more comprehensive view of CBPR and
non-participatory research alike. Long-term, I think this can better promote participatory
research methods and advancing health equity by recognizing the importance of research that
intervenes in typical social structures. I look at researchers like Barbara Israel to find inspiration
for these lofty goals. So, I’d like to share a small glimpse of that right now:
[Sam visits the website of the Neighbors Working in Partnership project out of the
Detroit Community-Academic Urban Research Center. He describes how it builds community
capacity for advocacy and aiming for policy change. He mentions that it’s inspiring to him to
think about how categorizing such work as falling within the scope of public health research
partnerships might have seemed impossible around the time he was born.]

🔊 “Ritual & Transmission”

Can I get three volunteers from the audience?

We have health expert A, medical professional B, and layperson C here to illustrate

health communication. Health expert A, I’m going to send you a message. Your job is to get it to
medical professional B. Medical professional B, your job is to get the message to layperson C. I
am going to play the part of a health researcher by observing and analyzing this whole process.
[The volunteers will hopefully follow the instructions that Sam confidentially passes onto health
expert A, aiming to get layperson C to smile and wave at the camera.]

19
 Great. Now, I’m going to examine this process through a transmission lens of
communication. That is to say, I’m going to focus on how well my message got from A to C.
[Sam will talk about the speed of the process, the accuracy of the message, and the performance
of layperson C​.​] Following from these observations, my recommendations for improvement will
focus on the message and how it is delivered. We could take a technological approach and switch
to a VR-enable communication system where things like body language We could take a health
literacy approach and teach layperson C how to better understand the kind of messages that will
come from medical professional B. We could take a cultural competency approach and train
medical professional B how to tailor a message more specifically for people like layperson C.
We could take a policy approach and have clearer guidelines and definitions coming straight
from health expert A so there is little ambiguity for medical professional B.
That was the transmission lens of communication. Now I’ll examine what just happened
through a ritual lens of communication. That is to say, I’ll focus on the relationships and social
structures that this process just created. I positioned myself at the outside expert, solely
responsible for the outlining of goals and the metrics of success. I defined the process as starting
with A, and moving in one direction to C, but maybe we’d all like the outcomes better if C had a
chance to say what they’d like to be able to do, and worked with A and B to make it happen. I
alone decided what message was worth communicating, without input from the people required
to make it happen. What would it look like to repeat this with shared decision making power?
In the real world, obviously, a health communication process isn’t quite this
straightforward. But one really broad argument I make in my thesis is that there’s a lot to be
gained from learning how to use a ritual lens of communication in public health. There’s a real
opportunity for positive impact by learning where there’s more room for dialogue and shared
decision making around the roles that people get to play and the common interest at hand.

📖 “A People’s Guide to Precision Medicine”

[Sam pulls up the website for the zine, “A People’s Guide to Precision Medicine”. He
asks someone from the audience to pick an article that he can quickly summarize. Refer to
Appendix A to find all zine articles.]

20
💻 “A PEOPLE’S GUIDE TO PRECISION MEDICINE: THE DEVELOPMENT AND
DESIGN OF A MEDIA-BASED COMMUNITY ENGAGEMENT PROGRAM,” or “THE
CONFERENCE I MADE THIS POSTER FOR GOT CANCELLED AND I SPENT TOO
MUCH TIME TURNING A GOOGLE SLIDE INTO A POSTER FOR NO ONE TO SEE
IT, SO GUESS WHO’S HOSTING A POP-UP POSTER SESSION~”
[Sam gives an elevator pitch of Chapter 3 of this thesis, using an online slideshow
consisting of a conference poster, an abstract, and figures from Chapter 3 of this thesis.]

Figure 24:​ Logic model for the “People’s Guide” community engagement program. (See page ​__​ for this
figure in context.)

`
Figure 25:​ Network map for the “People’s Guide” community engagement program. (See page ​__​ for
this figure in context.)

21
🔄 “A KALEIDOCYCLE!”
[Sam demonstrates the function of the HER model’s physical kaleidocycle on camera.].

Figure 18:​ A demonstration of the HER model’s kaleidocycle rotating around itself​.​ (See page ​__​ for this
figure in context.)

This is a kaleidocycle! I love the way you can just fidget with this thing forever. And it’s
a model of community engagement on top of that. It’s a conversational tool that academic and
community research partners could use in evaluative conversations about their work. It divides
community engagement into a 4-phase cycle, with different prompts and questions in each one:
planning, acting, watching, reacting.
Everyone around the table in this conversation would have their own kaleidocycle with
these speaking prompts. This represents the fact that there isn’t just one singular objective view
that can summarize public health work. It’s a social process, and understanding the varying,
potentially conflicting viewpoints and priorities within it can lead to a more accurate
understanding of its actual impact.
It’s meant to help pace a conversation between project partners. The conversation can’t
move forward until everyone flips their paper to the next phase.
I’ve saved the exploration of the prompts for a different play. So for now, I’ll just say that
these prompts are based on theories by Stuart Hall and Nancy Fraser. They highlight the way that
different audiences can have different perspectives on the same communication program, as well
as the need to surface and discuss conflicts rather than create a homogenous view of public good.

22
👀 “A zine”
[Sam demonstrates the physical function of the HER model’s zine on camera.]

Figure 21: ​Pages 1 and 2 of the HER model zine. (See page ​__​ for this figure in context.)

This is a zine. It’s meant to help each person in a conversation about an

academic-community partnership document an evaluative conversation. It’s made by folding up
and cutting an executive summary of an academic-community partnership. It has spaces to take
notes on each phase of a 4-phase conversation about a community engagement process, with a
built-in break to reflect on the actual conversation. And then at the end you turn it into a zine by
giving it a front and back cover. The front cover depicts a success story. And the back depicts a
failure.
Each person has their own interpretation of the conversation and of the partnership itself,
even in light of standard metrics that might be used to evaluate it.

💃 “HER Model of Community Engagement”

[Sam walks through the phases and prompts of the Health Equity Rituals Model of
Community Engagement he developed for this thesis.]

23
 Figure 13:​ Kaleidocycle portion of the HER model of community engagement. Icons courtesy of the
OpenMoji Project. This tool is available under a CC BY-SA 4.0 license. (See page ​__​ for this figure in
context.)

Figure 19: ​Zine portion of the HER model of community engagement. Icons courtesy of the OpenMoji
Project. This tool is available under a CC BY-SA 4.0 license. (See page ​__​ for this figure in context.)

😺 “An excerpt from a summer workshop”

[Sam runs an excerpt from the ​#PMtldr​ workshop with the audience. See Appendix A for
the workshop guide. He asks for responses to this excerpt’s question in an online chat box.]

Section 4: Precision Medicine and Disease Prevention.

So far we’ve focused on precision medicine as an approach to medical treatment.

However, precision medicine impacts disease prevention too. Precision medicine might help
predict what kinds of people will get a disease in the first place. Again, what does “kinds of

24
people” mean? It might mean a particular combo of genes, environment, and lifestyle. It’s hard
to say right now.

Figure 0: ​Genetics and environment came together to shape the cat we see today.

But these ideas about disease prediction aren’t new. We already use genetic and
hereditary information to predict disease and make health decisions. For example, you might
know of certain health conditions that run in your family. And tests for mutations in genes
related to cancer have been available for decades. However, there’s still a lot we can’t predict.
It’s possible we just don’t know all of the risk factors for certain diseases. Or, we don’t know
about specific combinations of risk factors that lead to an actual disease. One of the promises of
precision medicine is to help provide more information to make better predictions.
You might be familiar with commercial genetic testing for health. Genetic testing
companies can tell you if you have a certain version of a gene that’s known to lead to a specific
disease. These companies can also tell you if you a have a version of a gene that lots of people
with a certain disease also have. Precision medicine aims to go beyond this, incorporating
genetic information, lifestyle info, medical history, etc. to better predict whether someone will
get a certain disease. The idea is that more info can lead to better predictions for more people.
Ideally, precision medicine can help all people be healthier by providing better
predictions about their health. They'll be able to talk with their health care providers about their

25
risks. They’ll be able to make informed decisions about their lifestyle and their medical care.
However, things probably won't be that simple for everyone.

Question Time.

● We already know that diet and exercise are important to health. We already know that
sleep and social support are important to health. ​Do you think precision medicine can
offer useful information for you to form healthy habits? Why or why not?

👽 “The Future of All of Us”

[Sam silently plays the “What is All of Us” animated introductory video to the​ All of Us
research program. Meanwhile, Sam speaks the lines below. Once he is done, he will turn on the
video’s audio track. This should be around the point in the video at which the narrator describes
how everything changes once enough people join the project.]
In the year 2060, the National Institutes of Health (NIH) will have long moved past its
original 10-year timeline for the All of Us precision medicine research program. Right now, the
idea of research participants as partners is still forming. I’d like to think this mission will live on
through an expanded scope of work. Federal research grants will include requirements around
research training and professional development for people from medically underserved
communities. Review boards will employ people who have experienced the health issues being
researched. The NIH will mandate collaborative research with communities that have historically
experienced health inequities. Translational research will be included in this scope. Such work
will help operationalize the findings of biomedical research into community development plans,
health interventions, and policy decisions. The NIH will require community benefits agreements
and collaborative evaluation plans. Members of research institutions’ surrounding communities
will be trained to document scientific research processes and use creative means to educate
others about All of Us findings. Such community engagement will be evaluated in part by the
kinds of connections formed and relationships maintained throughout the process. Unfortunately,
there’s no reference to cite for this paragraph’s claims. It’s my own lofty vision for the world I
want to live in when I’m 68 years old.

26
Works Cited.

Braveman, P. (2014). “What are health disparities and health equity? We need to be clear.”

Public Health Reports​, 129 (Suppl 2), 5–8.

Bureau of Health Workforce. (2019, June). “Medically Underserved Areas and Populations

(MUA/Ps)​.”​ ​HRSA.gov.​ ​https://bhw.hrsa.gov/shortage-designation/muap

Lister Hill National Center for Biomedical Communications. (2020). “Precision Medicine.” In

Help Me Understand Genetics​ (pp. 297–305). US National Library of Medicine.

https://ghr.nlm.nih.gov/primer#precisionmedicine

27
 CHAPTER I: A LOOK AT THE LIMITS OF PUBLIC HEALTH COMMUNICATION AS
IT EXISTS TODAY.

“The future of health begins with you.” This slogan greets me as I visit the website for
the National Institutes of Health (NIH) ​All of Us​ research program. A photo of people of varying
sizes, ages, races, and abilities fills the left side of the page. Their smiling faces match the
optimistic tone of the paragraph on the right side of the page. It describes the groundbreaking
effort of ​All of Us​ to include over one million people in precision medicine research. That is,
research drawing on large amounts of genetic, behavioral, and clinical data to develop more
targeted methods of medical care.

Figure 1:​ Header image from an informational brochure for ​All of Us​. ​(All of Us Research Program,
n.d.-c)

Barack Obama set this optimistic tone when he announced the Precision Medicine
Initiative (PMI) in his 2015 State of the Union Address. He charged the PMI with the
responsibility to “bring us closer to curing diseases like cancer and diabetes, and to give all of us
access to the personalized information we need to keep ourselves and our families healthier.”
(​Remarks by the President in State of the Union Address​, 2015)​. Accounting for over 60% of the
$215 million PMI budget, it is clear that the NIH is positioning ​All of Us​ as a key step in shaping
the future of health research ​(Precision Medicine Initiative (PMI) Working Group, 2015)​. ​All of
Us​ has united universities, hospital systems, for-profit companies, and non-profit organizations
across the country to achieve its research recruitment goal of one million people—and it is well

28
on track to do so. After starting recruitment in May 2018, this coalition recruited over 200,000
people in its first year ​(All of Us Research Program Investigators, 2019)​.
When I look at the ​All of Us​ research program, I see its overarching message: diverse
representation in research will benefit everyone. More participants will lead to more data. More
data will lead to more scientific knowledge. More scientific knowledge will lead to more
personalized health information and care. And that will lead to better health for all of us. As the
program’s animated introductory videos promises, “Once enough people join, suddenly
everything changes.” ​(All of Us Research Program, 2017)​.

Figure 2:​ Two frames from an ​All of Us​ intro video. They illustrating a relationship between diverse
participation in research, data, and advanced medical knowledge ​(All of Us Research Program, 2017)​.

I want to believe this message. I want to immerse myself in this bright, straightforward
image of an equitable future. I want to be in those smiling photos. I want to feel like I’m part of a
population that acts in the interests of everyone’s well-being. I want to live in the ​All of Us
world, where scientists and health professionals can alchemize datasets into health equity. But I
know that this is a romanticized picture of scientific research. It’s disconnected from the
inequities in the way of the PMI’s lofty vision. Not that there’s anything wrong with a lofty
vision… It’s just that I read this story about the future as one that the NIH did not create with the
communities whose lives it would like to improve.
​ ouTube channel and click on a video about LGBTQI communities.
I go to the ​All of Us Y
It starts with medium close-up shots of LGBTQI health professionals speaking about personal
experiences with discrimination and stigma in the medical system. Somber music plays in the
background. The interview subjects paint a picture of how these kinds of experiences lead to

29
worse health for LGBTQI communities. Then around the 2-minute mark, the background music
takes an inspirational turn. The speakers describe a vision of the future that the viewers can look
forward to. And the solutions to these cultural and societal problems somehow revolve around
more data ​(All of Us Research Program, 2019a)​.
It is true that underrepresentation in medical research is a serious problem. The unknowns
of queer communities’ health have negative impacts in people’s lives. That’s why the
Sacramento LGBT Community Center uses the phrase “knowledge is power” in its promotion of
All of Us​ ​(Peak, 2019)​. The Sacramento center does not seem to be alone in this sentiment, as a
national survey showed LGBT adults expressing high support for the PMI and willingness to
donate biological samples ​(Kaufman et al., 2016)​. However, the ​All of Us​ promise of addressing
social issues through biomedical and clinical research rings untrue to me. After all, medical
breakthroughs will be most accessible to people who can safely access medical care. In the US,
this depends on factors like geography, income, insurance status, and the safety of social
interactions within medical institutions.
Now, I am not arguing against precision medicine or current practices of health research
writ large. Rather, I am arguing for improved conceptions of communication and community
engagement to be integrated into such work. I argue that this can help the US health system
better serve the needs of medically underserved communities through research and clinical care.
I argue that this is a necessary part of advancing health equity. With a clear charge to improve
health for “all of us,” it is clear that this motivation aligns with the goals of the Precision
Medicine Initiative. And it’s fortunate that this national program is positioned to help advance
health equity. Why? Because health equity is not a niche interest. Health equity must be a key
part of the future of this country.
In the year 2060, nearly 1 in 5 Americans will be immigrants. Nearly 1 in 4 will be
elderly. No racial/ethnic group will make up a majority of the population. ​(Colby & Ortman,
2015)​. The US government has the opportunity and the imperative to better support historically
marginalized people in a world even more pluralistic than our present. That involves learning
tough lessons from our world as it is, including a longstanding environment of intertwined
disparities in health, income, education, and employment ​(Centers for Disease Control and

30
Prevention, 2013)​. How will this country grow to keep its population healthy and happy in 2060?
The highly collaborative structure and multi-pronged approach of ​All of Us​ helps me imagine the
possibilities.
In the year 2060, the NIH will have long moved past its original 10-year timeline for the
All of Us​ research program. I would like to think that the ​All of Us m
​ ission will live on through
an expanded scope of work. Federal research grants will include requirements around research
training and professional development for people from medically underserved communities.
Review boards will employ people who have experienced health issues being researched,
charged with an understanding of research ethics that moves beyond individual protections to
community benefits. Further, the NIH will mandate collaborative research with communities that
have historically experienced health inequities, and it will provide infrastructural support to
ensure this happens responsibly. Translational research will be included in this scope. Such work
will help operationalize the findings of biomedical research into community development plans,
health interventions, and policy decisions. The NIH will require community benefits agreements
and collaborative evaluation plans. This will help track the benefits/responsibilities for academic
researchers and community partners involved in such work. Members of research institutions’
surrounding communities will be trained to document scientific research processes and use
creative means to educate others about ​All of Us​ findings and maintain accountability.
Unfortunately, there’s no reference to cite for this paragraph’s claims. It’s my own lofty vision
for the world I will live in when I am 68 years old.
As I said earlier, there’s nothing wrong with a lofty vision. I firmly believe in the need
for stories and dreams to latch onto while doing the long, arduous work of cleaning up the mess
of current health inequities. Like everyone, I live at the intersection of many social forces and
personal identities. These intersections inform my ideas about what the future should look like. I
have professional experience grappling with issues of equity and wellbeing in the abstract as a
public health researcher. I have personal experience with the same issues as part of a medically
underserved community growing up. I know the anxiety that comes with navigating an uninsured
family member through a major medical crisis. I know what it’s like to find out that there are
entire worlds of resources and privilege that I had not been privy to growing up. I carry these

31
experiences with me. They simultaneously fuel my passion and cause me to trip over myself as I
figure out how to act on it. It helps to imagine wildly different worlds and use them to orient my
attitudes and actions. That’s not so different from the images of scientific progress and universal
benefit that ​All of Us​ promotes, is it?
The existence of precision medicine technologies means little to me until I can picture a
use for them that can fix power imbalances across our society. That’s a slightly different picture
than the one the NIH is painting via precision medicine, focusing on health outcomes and
research. Regardless, it looks like the NIH and I have more similarities than differences. We both
want to use communication and media to create images of possible futures. I don’t think we’re
particularly concerned with getting people to memorize the details of these worlds. Nor do I
think we’re particularly concerned with logically convincing people of these worlds’ merits. I
don’t think these forward-looking communications rely on intellect or logic to make their case at
all. They’re not instruction booklets. They’re windows into an imagined future. They let health
professionals, researchers, policymakers, patients, and communities see a path to a community of
shared values. The innovation at the heart of ​All of Us​ isn’t technological, but social. To
paraphrase John Dewey, it isn’t the outward event itself that’s news, but the human emotion and
perception of it ​(Dewey, 1927/2012, p. 141)​. Like much other science communication, I think ​All
of Us​ is an attempt to progress toward what Dewey called the public’s most urgent problem:
finding and identifying itself ​(Dewey, 1927/2012, p. 159)​.

Figure 3: ​A picture from a design fiction workshop I ran with 2019 ChicagoCHEC Research Fellows.
One group imagined a future with equitable access to income, housing, and transportation. In this case,

32
 their character Nicole only has one main concern when it comes to addressing her health issues: her
shyness.

I. A: Health communication in the US largely focuses on one-way transmissions

of information.

Before its days as a formalized field, US public health had roots in the contradictions of
the top-down promotion of national well-being through controlling specific populations’ bodies.
Such efforts began with settler colonialism and the violent control of enslaved people alongside
minimal efforts to keep them alive. From these roots eventually grew local policies to capitalize
on international trade while addressing concerns of ships and immigrants bringing disease to
coastal cities. Eventually came wartime efforts to keep soldiers from dying of disease ​(Fee, 1994,
pp. 224–230)​. As US public health became a formal field in the late 19th century, health
professionals prioritized biomedical solutions and perceptions of political neutrality over reform
of education, labor, housing, etc. to improve health outcomes ​(Fee, 1994)​. In this tension, I see a
history of professionalized public health efforts overshadowing grassroots socio-political change.
Sociologist Max Weber described such a phenomenon in terms of a relationship between
capitalism, bureaucracy, and professionalization, in which these three forces reify each other as
part of a society focused on the pursuit of impersonal, so-called rational goals ​(Ritzer, 1975)​.
It is important to note that this tension between top-down expertise and grassroots social
change is not unique to public health. There are similar conflicts between top-down expertise and
community-based action in education ​(Freire, 1970/2005)​, arts ​(Boal, 2006)​, and democracy
itself. Though scholars have exaggerated the extent of a bipolar debate between John Dewey and
Walter Lippmann, the contrast between their espoused views of “the public” represents
longstanding debates about American society ​(Jansen, 2009)​. Lippmann described his
contemporary society as masses in need of experts to devise plans ​(Lippmann, 1922, p. 231)​. He
doubted the ability of people to enact democracy by making informed decisions. He questioned
the practice of leaders swaying the opinions of people who knew less than they did about matters
of policy. His proposed solution to these questions of social order was a network of specialized
bureaus charged with gathering information and making decisions. This would free up citizens to

33
“refuse... the burden of these decisions” ​(Lippmann, 1922, p. 401)​. John Dewey, meanwhile,
eschewed the idea of external authority and intense specialization. Instead of shifting power
further to an expert class, he argued for an even more participatory democracy than that of the
US. Dewey called for wider spheres of interest and greater dialogue among citizens, enabled by
accessible education and erasure of class divisions ​(Dewey, 1916, p. 101)​. Such an equitable
context would allow a network of interconnected citizens to discover a common interest and take
action toward it.
It is important to note that the tension between specialized expertise and grassroots social
change is artificial. Yes, there is a huge difference between a panel of experts making decisions
for people and communities making decisions for themselves. However, there is no reason that
professional experts and local communities must be in conflict with each other. This is already
evident in public health today. To address an issue like the spread of human papillomavirus
(HPV) requires various kinds of expertise—not just professionalized medical expertise. Teams of
researchers must use their education and training to learn about the structure and function of the
virus, develop a vaccine, and ensure it is safe and effective. Manufacturers must have the
expertise to ensure adequate supplies of safe, effective vaccines for the population. Health care
professionals must learn how to administer the vaccine, contribute to best practices around it, and
monitor for complications. Local community members must use the knowledge of their own
communities and political structures to ensure widespread access to the vaccine in order to
minimize the public health risk of HPV. Each realm of expertise is necessary to address this
public health issue. Importantly, no group can solve the problem on their own. Any successes
and failures among one of the groups has an impact on how the rest of the groups can respond.
Public health already depends on the interactions between numerous groups with varying
kinds of expertise. Whether or not it’s explicit, community engagement is part of all public
health work. In this chapter, I argue that dominant conceptions of communication and
community engagement limit the impact of public health work in the US by focusing on a
top-down transfer of information at the expense of improving the networked interactions already
critical to public health.

34
I. A1: A “transmission view” of communication can work in tandem with a “ritual view” in
the field of public health.

Communication scholar James Carey coined the terms “transmission” and “ritual” to
argue for the importance of including cultural lenses in communications research ​(Carey, 1989)​.
He identified a focus on audience reach, short-term effects, and laboratory studies in the field at
the time. He associated these dominant trends in research with a “transmission view” of
communication that focused exclusively on the transfer of information. He described the limits
of such research, which produced scientific knowledge unable to account for cultural meanings
and systems-level impacts of communication. He proposed the “ritual view” to describe an
alternative that focuses instead on how a communication process maintains the social structures
that it is a part of.
Figure 4 illustrates the difference between these two views through the example of a
newspaper story about the health benefits of eating salmon. In the transmission view of
communication, the story influences the reader to eat salmon and feel good about it. In the ritual
view of communication, the story filters through the reader’s preexisting positive feelings about
salmon. The interaction between the story and the reader’s worldviews maintains a positive
relationship between the reader and the newspaper. It also reinforces the reader’s perception of
belonging to a community of salmon lovers that get their news from this paper.

35
 Figure 4​: Illustration of the difference between the transmission view (left) and ritual view (right) of
communication.

The original conception of ritual and transmission views of communication did not
describe health communication specifically. However, it is clear that both of these views can lead
to productive public health research and practice. Consider patient-provider relationships in
medically underserved communities as an example. Researchers operating under a transmission
view of communication might examine whether underserved community members receive
relevant medical advice from providers in federally qualified health centers. In an applied
setting, public health officials might focus on supplying prevention information on a particularly
common health issue within such centers. Focusing on the transmission of information alone,
however, overlooks the broader environment of possibilities for acting on that information, as
well as the cultural significance of long-term interactions with health information, medical
professionals, the federal government, etc.
A ritual view of communication can lead to research questions that focus more on the
system of power and culture in which communication operates. For example, communication
researchers might investigate whether patient-provider relationships foster trust in federally
qualified health centers broadly. In an applied setting, public health officials might focus on how
federally qualified health centers’ communication efforts incorporate medically underserved
communities’ local knowledge.

36
 The transmission and ritual views of communication focus on different facets of the
communication process. They are equipped to handle different, yet complementary scopes of
research and practice that can help improve real-world communication. This multifaceted view
of communication is necessary to account for the ways that long-term relationships, cultural
meanings, and power relationships complicate notions of communication as a simple
transmission of information.

I. A2: The transmission view of communication dominates in US public health.

Although there are fruitful possibilities for both transmission and ritual views of
communication in public health, Carey’s critique of transmission-focused communication studies
applies in the field of public health today. For example, examine the impact of the Health Belief
Model (HBM) on public health research in the US. Social psychologists at the US Public Health
Service created the model to describe how perceptions of risk, benefit, and efficacy impact health
behaviors ​(Janz & Becker, 1984)​.

Figure 5​: Diagram of the Health Belief Model from Janz and Becker ​(Janz & Becker, 1984, p. 4)​.

HBM remains widely influential in health research, with over 3500 citations of Janz and
Becker’s 1984 review of the model in Web of Science databases and over 950 in PubMed
Central (the National Library of Medicine’s research archive). Importantly, HBM does not
actually describe what communication is or the mechanism by which it works. Rather, health
researchers have largely used HBM to conceptualize the ways that communication impacts

37
health behaviors through aiming the transmission of information at one of the factors HBM
outlines. As such, HBM has informed research-tested communication interventions that the
National Cancer Institute highlights for use in highly targeted populations. Examples include:
● Telephone counseling and mailed print materials to promote colonoscopy screening for
family members of someone with a colorectal cancer diagnosis ​(National Cancer
Institute, n.d.-b)
● Targeted mailing to increase mammogram rates among Medicare recipients ​(National
Cancer Institute, n.d.-c)
● Educational presentations and videos to increase colorectal cancer screening rates among
uninsured Hispanic adults ​(National Cancer Institute, n.d.-a)​.

The focus on a transmission view of communication goes beyond the influential Health
Belief Model. The National Library of Medicine defines communication as an “exchange or
transmission of ideas” ​(U.S. National Library of Medicine, n.d.-a)​. It further specifies health
communication as “the transfer of information from experts in the medical and public health
field to patients and the public” ​(U.S. National Library of Medicine, n.d.-b)​. As part of the
federal government’s curated vocabulary to index health-related research, these definitions
represent the broad strokes of research around health communication: getting information from
A to B. Federal research funding has the power to reinforce this transmission view, such as
through the National Cancer Institute’s (NCI) funding preference for research on individual-level
communication interventions ​(Ramírez et al., 2013)​.
A transmission view of communication dominates in applied settings as well. For
example, in its guide to communication programs, the NCI focuses on how communication can
spread information that will influence people’s health decisions. It offers theoretical frameworks
and models as planning tools ​(National Cancer Institute, 2004)​. Some tools, like the Consumer
Information Processing Model and the Diffusion of Innovations theory, provide ways to think
about how information spreads. Others, such as the Social Cognitive Theory, outline pathways to
health-related behaviors and highlight opportunities for communication to influence them. The
National Institutes of Health propagates this transmission view broadly, not just through the
National Cancer Institute. For example, “A Checklist for Communicating Science and Health

38
Research to the Public” focuses on the language, tone, and overall scope of information
(National Institutes of Health, 2018)​. Grants to establish “Centers of Excellence in Cancer
Communication Research” focus on how to “extend knowledge benefits equitably throughout the
population.” ​(National Institutes of Health, 2007)
The ​All of Us​ research program enacts this focus on the transmission of information as
well, dating back to its initial promise that the Precision Medicine Initiative will “give all of us
access to the personalized information we need to keep ourselves and our families healthier.”
The promise of information is central to the NIH’s stated benefits of the program, which includes
centralized access to research data for scientists, personal data portals for participants, and public
data portals for high-level aggregate figures.
The community engagement materials mirror this centralized structure for distributing
information nationwide. The announcement of the funding opportunity for the ​All of Us​ publicity
campaign outlined its overarching goals: conveying the value of participating in precision
medicine research using consistent wording that can be used by multiple partners ​(National
Institutes of Health, 2015)​. The award ended up going to a Los Angeles-based ad firm that has
worked on previous nationwide research campaigns ​(​Project Information:
3OT2OD023205-01S1​, n.d.)​. The results are a top-down communication program that distributes
uniform messages across the country. Paradoxically, these messages universalize the narrative
around precision medicine while attempting to speak directly to the concerns of various
smarginalized groups.
This narrow focus on the transmission view of communication is not limited to public
health, which draws on other fields of communication research. For example, in ​A Survey of
Scientific Communication Theory​ Pavitt notes that most communication models do not focus on
communication processes and systems. Rather, they focus on the reception or the production of
one-off messages to achieve a specific goal, without acknowledging any feedback loops. ​(Pavitt,
2016, p. 347)​. However, the effects of this narrow focus have especially significant implications
in health-related fields. This focus is limiting the impact that health research and community
engagement can have in medically underserved communities.

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 Figure 6​: A composite of the front covers of the All of Us brochures intended for various populations.
The Hispanic community cover is top left, Asian community at the top right, African American
community at bottom left, and general community at bottom right. The text on the inside of the brochure
is identical across the 4 brochures. ​(All of Us Research Program, n.d.-a, n.d.-b, n.d.-c, n.d.-d)

I. B: The dominance of the transmission view of communication limits the impact

of public health work in medically underserved communities.

I look at the coordinated effort that makes up the ​All of Us r​ esearch program and see a
tremendous opportunity. ​All of Us​ program partners span geographic areas, public and private
sectors, and constituencies in the US. The list of partners includes: American Medical
Association, American Public Health Association, Asian Health Coalition, Asian & Pacific
Islander American Health Forum, Baylor College of Medicine, BloodCenter of Wisconsin,
Boston Medical Center, Broad Institute, Henry Ford Health System, Iota Phi Theta Fraternity
Inc, Kappa Alpha Psi Fraternity Inc, Mayo Clinic, Morehouse School of Medicine, National
Association of Hispanic Nurses, National Baptist Convention, National Black Nurses
Association, National Rural Health Association, NYC Health + Hospitals/Harlem,
PatientsLikeMe, Stanford Medical School, Vanderbilt University Medical Center, University of
Miami Miller School of Medicine, University of Mississippi Medical Center, US Department of
Veterans Affairs Medical Centers, Walgreens, WebMD, YMCA of the USA Greater Houston…
and that’s not the half of it.

40
 Renowned universities and research institutions working in tandem with groups like
historically African American fraternities and local community centers have a great opportunity
to intervene in power dynamics that encompass their partnership. Health systems working with
groups like the National Association of Hispanic Nurses and National Black Nurses association
can learn how to better support their own staff in the pursuit of health equity. Companies like
Walgreens and PatientsLikeMe can learn more about how to make their services more impactful
for the constituencies of groups like the US Department of Veterans Affairs and the National
Rural Health Association. This is the kind of learning that will be necessary for precision
medicine to actually improve healthcare for all of us. This is the kind of learning that can help
ensure these partnerships and engagement efforts amount to more than just pipelines for
centralized flows of data and information.
At the same time, I’m afraid that this kind of learning and intervention process isn’t a
national priority in federal bodies like the NIH. There are a lot of nuanced tensions underlying
research participation. As Mahri Bahati of PRIDEnet says in an interview on the All of Us
YouTube channel, “I think our community wants to be a part of these medical breakthroughs that
are going to be coming through.” ​(All of Us Research Program, 2019b)​. This view aligns with
movements from queer communities that have organized around research representation and
medical care as a right. Historically, the AIDS Coalition to Unleash Power (ACT UP) protested
the US Food & Drug Administration’s early approach to HIV/AIDS research ​(Eigo et al., n.d.,
sec. I)​. The group also produced their own calls for researchers to recruit groups experiencing
HIV/AIDS health disparities into clinical trials ​(Eigo et al., n.d., sec. II)​. A present-day example
is the National Center for Transgender Equality (NCTE), and its calls for questions about gender
identity and transgender status in government surveys ​(​Research & Data Needs,​ n.d.)​ as well as
access to better sexual health education ​(​Transgender Sexual and Reproductive Health: Unmet
Needs and Barriers to Care​, 2012)​. Such interventions would help ensure medical professionals
have adequate information to promote better health care for transgender people. This is exactly
the kind of informational intervention that precision medicine can carry out using a transmission
view of communication. This potential benefit underscores Bahati’s statement that, “you can’t
get treatment that works for us unless we’re a part of it” ​(All of Us Research Program, 2019b)​.

41
However, I’m afraid that community engagement around precision medicine will stop there,
before addressing the wider concerns of equity. For example, in the same document that the
NCTE called for better sexual education, it also called for nondiscrimination training and
adoption of formalized policies of nondicrimination and respect. Without improving the social
structures through which information will travel, ​All of Us​ (and precision medicine more
broadly) has the potential to inadvertently maintain LGBTQI health disparities by narrowly
defining the scope of success.
This example of the ​All of Us​ campaign’s approach to its LGBTQI research shows the
effect that dominant views of communication in public health have on medically underserved
communities. Technical and informational solutions will not be able to solve the social issues
that contribute to health disparities. Below, I outline how a transmission view of communication
contributes to this situation, as well the opportunities that a ritual view of communication
presents to correct them.

I. B1: A transmission view of communication ignores message receivers’ power. A ritual

view focuses on power dynamics.

A defining characteristic of the transmission view of communication is its lack of

recognition for the power of message receivers. Message senders may adjust their messages,
goals, and approaches in ways that determine what success and failure look like. Message
receivers interpret and either accept or reject the sender’s message, with message senders
evaluating the outcomes in terms of a desired response. In the case of public health work, the
desired response is usually a specific behavior, espoused opinion, or information recall. At the
end of the day, the message receiver either had the desired response or they didn’t. An exclusive
focus on this binary outcome ignores rich sites of action that could help advance health equity.

42
Figure 7​:​ ​Visual representation of Stuart Hall’s model of encoding/decoding. Systemic factors shape the
messages encoded into mass media. The media in turn shapes the audience’s decoding process. Finally,
the audience’s interpretations shape the systemic factors that will shape more media programs. ​(Hall,
1973/2007, p. 94)

In contrast, Stuart Hall describes mass communication as a process of encoding and

decoding meaning. Media producers, funders, and distributors encode intended meanings into
their communication programs. While they may influence audience interpretation, they cannot
control that process completely. As such, audience members have the ability to accept the
intended meaning, reject it, or negotiate a new meaning. Importantly, these audience
interpretations provide feedback into the environment that facilitated the making of the
communication program in the first place ​(Hall, 1973/2007)​. This encoding/decoding model
acknowledges the power and creativity of the audience to impact their broader environment
through their interpretation process. Bell hooks further elaborates on the generative process of
interpretation through her concept of the oppositional gaze. She describes how black women in
particular consume media with an oppositional gaze, creating unintended meanings for white-
and man-centric media that do not speak to their reality. The oppositional gaze is a technique of
finding personal value in spite of (and in conversation with) the ways the media products
represent and maintain social inequities ​(Hooks, 1992)​.

43
 The field of public health could greatly benefit from such engagement with message
receivers’ power to shift the communication environment through unexpected interpretations.
Studies on research recruitment of medically underserved communities provide a fruitful
illustration. There is a federal mandate to include women and racial/ethnic minorities in
NIH-funded clinical research ​(National Institutes of Health, n.d.)​, as well as increasing research
attention on health disparities, as evidenced by the Precision Medicine Initative’s targeted
recruitment of racial/ethnic minority and LGBTQI communities. With this increased attention
paid to recruitment of underrepresented populations, the field of public health contains a plethora
of studies on how to better represent racial and ethnic minorities in research. Even a cursory
literature review will yield many research-based suggestions on topics including: recruitment
channels ​(Guillory et al., 2018)​, sampling strategies ​(Shaghaghi et al., 2011)​, informed consent
processes ​(Kraft & Doerr, 2018)​, and targeted retainment efforts ​(Warren-Findlow et al., 2003)​.
The emergence of this line of work led to sociologist Steven Epstein to identify it as a new field:
recruitmentology ​(Epstein, 2008)​. Such research is concerned with one short-term metric of
success: research participation.
To be sure, representation in research is an important issue, especially in the context of
precision medicine research. However, current recruitment work focuses on the ways that
recruiters and researchers can transmit information effectively to increase research participation.
In doing so, it reinforces the position of power of people in federally funded research institutions.
Health is good, and thus health research must be good, and thus potential research participants
just need to be convinced—in the right way—of the benefits of research participation long-term.
Recruitment research focuses on how to make that persuasive process more effective. It does not
typically question, for example, whether the only time someone from a medically underserved
community interacts with someone at a university is when there is data to be gathered.
It’s hard to say exactly what recruitment research might look like if it overcame the
aforementioned hurdles of transmission communication. Some signposts are available from
research with African American communities, pointing to personal negotiations between mistrust
of research and the importance of representation in research ​(Scherr et al., 2019)​. One way this
might manifest is through research participation in spite of mistrust, as Hagiwara et al. found in a

44
telephone survey of African American people in the Detroit area ​(Hagiwara et al., 2014)​. Thus
recruitment research using a ritual view of communication might help examine and intervene in
the social structures that lead to desired recruitment metrics but not increased trustworthiness on
the part of research institutions. For example: should communication around precision medicine
even happen at an individual level? It is debatable whether an individual can ethically volunteer
genetic information that they share with their kin ​(Nelson, 2016, p. 16)​. Considering that
environmental health research findings will presumably apply to everyone living in a certain
geographic area, should recruitment and consent happen at a neighborhood level? Should
considerations of individual protections extend to community-level protections? Would
participants in a trial of a health intervention make the same participation decisions if they saw
examples of the ways that scholars will generalize their outcomes to represent, for example, all
uninsured Hispanic adults over age 40?
Such moral questions do not lie within the scope of public health communication
research when viewed through a transmission lens. Though health equity may point to answers
for such “should” questions, the individualistic frame of reference in a transmission view of
communication makes it difficult to consider community-level impact or power relationships
between groups of stakeholders. However, the ritual view opens up space to consider what power
dynamics are at play in a communication process. By considering social structures and
inter-group dynamics, questions of power and community-level impact are up for discussion.

I. B2: A transmission view of communication ignores impactful feedback loops. A ritual

view examines how various actors shape the environment in which they interact.

A transmission view of communication ignores the dynamic exchange between everyone

involved in communication and the environment in which it takes place. A community’s
relationship with a research institution, scientific research in general, or the health topic at hand
will not go into stasis just because a study ended. As an influential theory in public health, social
cognitive theory provides a fruitful example of the limits of the dominant paradigm in health
communication to address this.

45
 Albert Bandura proposed social cognitive theory as a way to describe the environmental
influences on human behavior, including observational learning ​(Bandura, 1977)​. The NCI
describes Bandura’s theory in relation to interpersonal communication. It highlights
observational learning as a key mechanism through which health communication programs can
work ​(National Cancer Institute, 2004, p. 223)​. As Pavitt notes in his survey of communication
theory, social cognitive theory does not explain what communication is or how it works. Rather,
it highlights a pathway through which communication can influence behavior through
observational learning—still focusing on the possible effects of the one-way transmission of
information. Bandura himself used this theory to hypothesize about the ways in which violence
on television might contribute to more aggressive behaviors in the audience ​(Pavitt, 2016, p. 62)​.
In public health, this line of thinking influences health interventions that focus on
communication to enhance self-regulation, such as the numerous information-based behavioral
interventions in chronic health conditions ​(Tougas et al., 2015)​.
Like other transmission-focused models of communication, social cognitive theory is
equipped to address individual-level impacts of new information (or new methods of sharing it).
What the social cognitive theory does not address is the way that communications and
populations will change in response to each other. For example, people receiving messages about
health behavior changes might respond differently over time. One such case is response fatigue
for one-way SMS messaging to promote adherence to a medical treatment regimen. Extant
research points to the possibility of two-way communication being more effective than one-way
messaging ​(Amankwaa et al., 2018)​. However, without an expanded view of communication,
such methods will still be in service of limited short-term outcomes, important as sticking to a
medical treatment may be.
Much like James Carey in the 1980s, communication scholar Annie Lang criticized the
field of communication studies in 2013 for focusing on short-term effects in a supposedly static
system of communication. She called for an approach to communication research that
acknowledges the dynamic nature of human systems, examining the changing nature of
interactions between messages, humans, and the environment over time. According to Lang, a
key issue with the current paradigm of communication research is that it assumes that

46
communication has a clear-cut beginning and end. She noted that this shortcoming has
effectively led to the division of communication studies into two subfields. One subfield is
humanistic, examining questions of power and culture (which resonates with the ritual view of
communication). The other is a social scientific field still focused on media effects (which
resonates with the focus of health communication research I have outlined above). She called for
an approach to communication research that instead focuses on specific individual-level
cognitive, emotional, and motivational variables that influence a person’s adaptations to a
communication environment over time ​(Lang, 2013)​.
Such a cognitive approach to health communication research could help produce health
interventions with a better base of background knowledge about why they work, not just under
what conditions. However, as a field deeply invested in real-world interventions as well as
generalizable knowledge, public health researchers cannot afford to make such a clear-cut
distinction between humanities research and social science research. Research findings are
useless in the field of public health if they do not have supports for use in real-world settings
awash in health disparities, coexisting cultures, preexisting relationships to media channels, and
uneven distributions of power. Real-world outcomes shape research questions in turn, leading to
lines of research around “underserved,” “underrepresented,” and “hard-to-reach” populations.
Research using a ritual lens of communication could help fill in the gaps of how these
relationships between communities and research institutions create an environment that will
impact public health
A ritual view presents a framework for research and practice that can supplement
transmission-focused and cognitive understandings of communication. It is necessary to have
research that shows a particular communication campaign can achieve specific outcomes, as well
as research that can explain why such methods work on an individual level. However, these lines
of inquiry are insufficient to explain what supports or hinders a communication campaign in a
medically underserved community. They also cannot account for the historical and social
contexts in which public health communication takes place. Communities exist in a particular
point in time and space, which will necessarily introduce new factors into the best
evidence-based plans. A ritual view accounts for the social context in which communication

47
takes place, not just allowing an examination of the ways this context shapes communication but
also the ways that communication will shape the environment. A positive experience with one
campaign from a public health institution may prime an audience for future interactions. A
breach of trust from one research institution may negatively impact projects coming out of other
institutions. A transmission view cannot account for such important factors.

I. B3: A transmission view of communication ignores the political nature of public health.
A ritual view gives attention to the broader social contexts in which communication
takes place.

Public health communication typically rests on assumptions of the neutrality, objectivity,

and sufficiency of scientific knowledge in its capacity to facilitate positive health outcomes. This
is the underlying logic of the ​All of Us r​ esearch program and of the approach to precision
medicine more broadly. It is important to acknowledge the rigor of scientific research and the
utility of its findings for effective health promotion. However, ignoring the political nature of
scientific research and public health work has created barriers to health equity that a transmission
view of communication is ill-equipped to address on its own.
First, public health is political in the sense that it shapes the systems of power in which
social groups interact, and those systems of power in turn shape public health. For example, the
process of forming research questions does not happen in a vacuum. It is a human decision
influenced by personal experience, existing research, and funder priorities. Whose personal
experience typically gets to factor in? Well, at least in biomedical research, only 18% of full
professors are women and about 5% of full professors are blacks/African American, Hispanic,
Native American, Pacific Islander, or multiracial ​(Valantine et al., 2016)​.
Related to issues in representation in the research workforce are questions surrounding
underlying worldviews that influence research questions. Some groups call for inclusion in
dominant research paradigms, such as in the case of endometriosis activists who worked to
reframe the understanding of the illness as a complex medical condition warranting more
funding for a standard biomedical research agenda ​(Čapek, 2000)​. This contrasts with less
mainstream epistemologies, which would call for different kinds of research questions and

48
long-term measures of success. For example, an Indigenous research agenda might center
self-determination and ask questions based around decolonization, healing, and survival rather
than how to best be served by people currently in power ​(Tuhiwai, 1999)​. A research agenda
informed by Deaf culture might focus on ways to improve quality of life for people with hearing
impairments while affirming the views of deaf people who want to be recognized as a member of
a linguistic minority community rather than individuals with medical problems to be solved
(Lane, 1995/1997)​.
So while health research, especially biomedical research, might be seen as politically
neutral, able to benefit all of us, the inclusion of certain health topics and the acceptance of
certain kinds of epistemologies are signs of its political nature. Further, the process of obtaining
funding to investigate research questions is limited by structural discrimination, as evidenced by
men with previous NIH grants having higher application and funding rates than women with
similar career experience ​(Pohlhaus et al., 2011)​ and the significantly lower likelihood of the
NIH to award black scientists R01 funding than applicants of other racial/ethnic groups ​(Ginther
et al., 2011)​.
The knowledge gained from research is not politically neutral either. Donna Haraway has
discussed the illusion of objectivity and perfect understanding common in the rhetoric of science.
As opposed to objectivity as currently understood, she argues that all knowledge is situated in a
specific context. A more ethically responsible alternative to the pursuit of complete, objective
knowledge is the pursuit of a multiplicity of incomplete knowledges. Importantly, this
knowledge should clearly indicate the context in which people produced it. She describes the
strength of the knowledge of subjugated groups due to their experiences identifying and
overcoming privileged groups’ attempts to declare their own viewpoints objective and universal
(Haraway, 1988)​. As Kimberlé Crenshaw notes, the ability to produce, frame, and wield
statistical knowledge is a tremendous power. Due to intersecting systems of subjugation, women
of color are often denied access to this power and most vulnerable to being harmed by it on
multiple fronts ​(Crenshaw, 1990)​. Given its focus on the social relationships and power
dynamics that a communication process maintains, the ritual view of communication is
necessary in public health to address the ways that knowledge carries with it political power. It is

49
also necessary to examine and intervene in the ways that such political power is unequally
distributed.
Finally, US public health professionals have long been aware that acting in the interest of
“the public” involves making change at governmental levels. As such, actually acting on findings
from public health research requires navigating scientific knowledge through the gatekeeping of
policymakers. This is especially true when acting in the interest of medically underserved
communities. For example, the American Public Health Association has used health equity as a
frame to argue for policy change on a variety of social issues that include raising the minimum
wage, implementing universal preschool, and supporting affirmative action programs ​(American
Public Health Association, 2018)​. The link between public health and social justice means that
public health advocates must find ways to argue for policy change in an environment of
corporate mass communications that rely on ideas of “market justice” ​(Dorfman et al., 2005)​. As
such, the Robert Wood Johnson Foundation has published a guide to framing messages about
social determinants of health differently for Democrats and Republicans to help lobby for policy
change that can actually reduce health disparities ​(Robert Wood Johnson Foundation et al.,
2010)​.
The transmission of information is not a sufficient framework to effectively investigate
and interact with the broader social system in which public health communication takes place.
Political systems shape the effects that information has. As such, a ritual view of communication
will be necessary in using communication as a way to link research findings with real-world
health outcomes that government policies can support and maintain.

I. C: Conclusion.

In this chapter, I have argued that a transmission view of communication dominates in

US public health. I have illustrated the impacts of this situation on health equity, owing to the
inadequacy of a transmission view of communication to account for audience power, feedback
loops, and politics. I have demonstrated the gaps that a ritual view of communication can fill. In
the rest of this thesis, I will theorize about the ways that a ritual view of communication
intersects with existing research frameworks, propose a tool to leverage a ritual view of

50
communication in academic-community research partnerships, and describe the ongoing
development of a community engagement program that operates through a ritual lens.

51
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 Chapter II. A RITUAL-BASED TOOL FOR HEALTH EQUITY.

Through recurring motifs of scientific breakthroughs, technological progress, and

generations to come, imagined futures are at the heart of the Precision Medicine Initiative (PMI).
From the beginning of the PMI, the Obama White House imagined a future where health data
would be portable enough to share between healthcare providers, researchers, patients, and
research participants ​(​The Precision Medicine Initiative,​ n.d.)​. Shortly after the PMI launch,
National Institutes of Health (NIH) Director Francis S. Collins and National Cancer Institute
(NCI) Director Harold Varmus imagined how the initiative would support the next generation of
scientists to “develop creative new approaches for detecting, measuring, and analyzing a wide
range of biomedical information” ​(Collins & Varmus, 2015)​. They even laid out a vision of the
future in which the PMI is able to have a global impact through collaborations with similar
projects in other countries. The tagline of ​All of Us​, the PMI recruitment and research program,
orients audiences toward the “future of health,” with improved health for future generations
thanks to research participation today ​(All of Us Research Program, n.d.)​.

Figure 8:​ A still from “The Future of Health Begins with All of Us: A Conversation with the NIH
Director.” The NIH director discusses how this visionary project depends on a large, diverse cohort of
research participants to make it a reality. ​(All of Us Research Program, Streamed live on Mar 14, 2019)​.

With considerable resources, cooperation across federal agencies, and a comprehensive

national network of project partners, these imagined futures easily translate into plans of action.
A project as big as the PMI needs a lot of support to work. The National Cancer Institute

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received $70 million for identifying genomic drivers of cancer to develop new treatments. The
Food and Drug Administration received $10 million to develop databases in support of the PMI
regulatory structure. The Office of the National Coordinator for Health Information Technology
received $5 million to develop interoperability standards for data-sharing across health systems
(Office of the Press Secretary, 2015)​. Before recruiting research volunteers, the PMI laid out its
goals, governance, and overall approach. This level of coordination across government agencies
is impressive. Simultaneously creating legal, technological, professional, and social systems to
enable research will definitely lead to the discovery of new medical treatments and screening
methods. That’s what it was designed to do. It just strikes me that this sort of top-down planning
is at odds with the ethos of the ​All of Us​ research program, encapsulated in its motto: the future
of health begins with you. It’s hard to take that sentiment at face value with so much planning
ahead of time to outline the methods and goals of interactions between participants, researchers,
and institutions.
The values of the ​All of Us​ research program position participants as partners, with their
security, privacy, and access to research information ensured ​(National Institutes of Health,
n.d.-b)​. I see this public claim of partnership as a promising recognition of the need to rethink the
social structures of health research. At the same time, I question whether these values are enough
to make a meaningful impact on health equity in the context of precision medicine. The US has a
long, complicated history of public health research ethics and community engagement among
medically underserved communities. This history includes infamous events like the Tuskegee
study, lasting from the 1930s to the 1970s, in which health care workers left hundreds of African
American men untreated for syphilis ​(Jones, 1981/1993)​. The response to this egregious study
included the Belmont Report, which outlined basic ethical principles for human subjects
research. These principles focused on respect for personal autonomy, maximized individual
benefits, minimized individual risks, and justice ​(The National Commission for the Protection of
Human Subjects of Biomedical and Behavioral Research, 1979)​.
Individual protections for research participants are necessary. However they are not
sufficient to advance health equity, especially in the context of precision medicine. One’s genetic
information is shared with their family members. It can also be used to draw inferences about

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others from presumed similar geographic origins. Data about one’s environmental health factors
also apply to their neighbors. Are individual consent, protections, and benefits enough to account
for the ripple effects of population-level research?
An era of precision medicine requires an expansion of research ethics and a
reconfiguration of the standard tools of research to better ensure health equity. Researchers using
community-based participatory methods have noted the need to go beyond traditional
interpretations of Belmont Report values to ensure equity in community partnerships, as well as
community benefits and empowerment ​(Shore, 2006)​. Tribal review boards provide noteworthy
models of the reconfiguration of research to build capacity and improve health of medically
underserved communities ​(Around Him et al., 2019)​. Such reconfigurations are necessary, as
illustrated by the early 2000s case of the Havasupai Tribe. Tribe members volunteered blood
samples for use in diabetes research by Arizona State University (ASU) researchers in the 1990s.
Some later discovered that their samples had been used for other areas of research they were not
aware of. Members took legal action against the university and the tribe banished ASU members
from their land as a result ​(Harmon, 2010)​. I worry about the professional response to such
situations. Focused on individualized concepts of ethics, scientists may focus on building in
more explicit language about potential reuse of biospecimens and research data while ignoring
questions of community sovereignty ​(Garrison, 2013)​. I see changes to US research regulations
in 2017 enabling this kind of thinking, with clearer guidelines and allowances for such practices,
termed “broad consent” ​(Office for Human Research Protections, 2018)​. This is consistent with
an individualized view of protection, privacy, and justice. If someone gives their consent to
broad reuse of their biosamples, then what’s the harm? If the samples are de-identified, then such
consent may not even be necessary since such materials no longer qualify as human subjects.
I argue that a lack of community engagement in forming research questions, using
biospecimens, and using research data is still a form of community engagement. It is still
impacting the relationship between researchers and medically underserved communities, as in
the case of the Havasupai Tribe. It reinforces an extractive relationship in which one group of
people are a source of data that another will use to build their careers, with the benefit of a far-off
promise of population health improvements. This has long been the promise of health research,

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and yet the US still sees devastating health disparities today. Present day efforts like ​All of Us
seek to deliver on this promise not just with medical breakthroughs, but also with individual
access to health information garnered through precision medicine research. ​All of Us​ is taking
steps beyond individual protections and benefits by incorporating participant ambassadors into
its Advisory Panel, Steering Committee, and Executive Committee ​(National Institutes of Health,
n.d.-a)​. If equity, innovation, and partnership are the future of health, then I hope that this is the
prologue. I hope that such steps are just the beginning of the program’s expansion of research
ethics and community engagement, signalling a changing tide in the way health research is
evaluated and funded.
In the previous chapter, I outlined the negative impacts of a dominant transmission view
of communication in public health. It leaves questions of power, feedback loops, and politics
unexamined, which has a negative impact on health equity as public health research institutions
continue to neglect medically underserved communities. I also highlighted opportunities to fill in
these gaps using a ritual view of communication. In this chapter, I define what a ritual view of
communication entails in the field of public health. I then explain the affordances of this view of
communication, especially in participatory research frameworks. Finally, I offer an evaluation
tool that leverages a ritual view of communication for use in public health academic-community
partnerships.

II. A: What Does a Ritual View of Communication Entail in Public Health?

“Henrietta Lacks.” This one name was all it took to raise a chorus of nodding heads and
hummed agreements at a focus group I was facilitating around participation in clinical trials.
Earlier on in the discussion, the patrons generally agreed that clinical trials needed to include
more African Americans and other people of color. However, once we brought the conversation
down to the individual level... Well… Look at what happened to Henrietta Lacks. They stole her
cells and let scientists all over the world use them without her consent. And what good did it do
for her, her family, or her community? For the focus group participants around the table,
Henrietta Lacks represented a history of unethical research on African Americans, the
imbalances of representation in the scientific research workforce, and an overall lack of

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trustworthiness in the US medical system. Henrietta Lacks may have been a historical case, but
for the patrons in the room, her story illustrated ongoing inequities.
I have not seen forward-looking efforts like the Precision Medicine Initiative
meaningfully engage with the past. As a public health researcher, I can see the motivation behind
this approach. Such projects represent new directions for research and community engagement,
which don’t need to be mired in associations with research that took place well before many of
today’s public health professionals were even born. As a member of a medically underserved
community myself, however, I can’t help but think of questions I know some of my family
members and neighbors would have. Are government institutions like the NIH hoping we don’t
know about issues like the Tuskegee study or Henrietta Lacks? I’m sure researchers working on
those projects said they were doing good things too. These genetic researchers are only
advertising the good parts of their work, right? What are they hiding? How would we ever
know? As someone bridging the gap between research institutions and a medically underserved
community myself, I can point to federal laws, research regulations, and internal review boards
to show how things have changed for the better. But then when I look at the makeup of the
medical field and the health research workforce, I’m not so sure. When I see the promise of
precision medicine research to lead to better health for all of us, I can’t help but wonder: aren’t
these the kinds of promises my parents heard?
Delivering on the promise of improved health for all requires wrestling with the past, and
applying lessons learned to our visions of the future. To impact a wide variety of communities,
this work requires collaboration with a wide variety of partners. I feel encouraged by the
partnerships that the ​All of Us​ research program has formed, as well as by the participatory aims
of its governance structure. But I worry that these networks will be leveraged in the primary
pursuit of transmitting the reasons to trust precision medicine research and participate in it. I
wonder what it would take to leverage these networks to make the project more responsive to
medically underserved communities needs’. How can ​All of Us​ position medically underserved
communities as sources of knowledge and authority, and allocate resources for their benefit
accordingly? How can ​All of Us​ move beyond a project-by-project, individualistic notion of

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research ethics to better position medically underserved communities for improved health? I
believe that a ritual lens of communication can shed light on possible answers.

II. A1: What does a ritual view of communication imply for community engagement in
public health?

Definition.
Within the realm of public health, I define a ritual view of communication by its focus on
the social structures that a communication process maintains, via shaping power dynamics, social
roles, expectations, conflicts, and feedback loops. This definition of ritual takes James Carey’s
concept of a ritual view of communication as a starting point, synthesizing it with Stuart Hall’s
concept of “encoding/decoding” and Nancy Fraser’s concept of “multiple publics” to be of use in
real-world community engagement settings. I do not propose that this concept of ritual replace
more transmission-focused conceptions of communication altogether. Rather, I propose that it
highlights opportunities for intervention and research in advancing health equity where current
approaches to communication and community engagement fall short.
My use of the term “ritual” takes James Carey’s contrast of ritual and transmission views
of communication as a starting point. In short, a transmission view of communication focuses on
the transfer of information, whereas a ritual view focuses on the broader system that the
communication process maintains. Carey highlights how communication resembles a traditional
Christian church service, wherein people come together in specific roles to maintain shared
worldviews and community ties ​(Carey, 1989)​. In the realm of public health communication, this
focus on roles, worldviews, and community implies examining community engagement efforts in
terms of how they shape relationships, shared knowledge, and power dynamics between the
stakeholders involved. While this abstract concept of ritual is useful for high-level critical
thinking about mass communication, its application in the intervention-focused field of public
health requires more detail about stakeholder interactions.
I fill in these gaps by incorporating Stuart Hall’s encoding/decoding model of
communication into my conception of the term “ritual.” Hall’s model focuses on the relationship
between the intended messages that producers encode into mass media and the variable

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meanings that audience members interpret via decoding them ​(Hall, 1973/2007)​. According to
Hall’s model, an audience member may completely align their personal reading of a mass media
message with the producer’s intended meaning, completely oppose the intended meaning, or
negotiate a separate meaning. However, as Hall’s model emphasizes, structural factors shape the
intended meanings that get encoded into communications. The decoded messages that audiences
interpret then feed back into the very systems of knowledge and power that will shape future
communications. For example, consider how federal funding structures outline expected
meanings for health communication before a project team even conceives of their own goals.
Eventually, the research team will interpret audience perceptions and interactions with their
program in reference to existing evidence-based communication programs and ideas about
communities that may or may not be “hard to reach.” These outcomes will then contribute to the
body of knowledge around public health communication and inform the aims of future
communications. Thus, I incorporate the idea of encoding/decoding into my conception of ritual
to account for varying audience interpretations, as well the feedback loops involved in
community engagement long-term.
Finally, my conception of a ritual view of communication incorporates Nancy Fraser’s
concept of multiple publics to address the potential political conflicts that arise in public health
communication. As Fraser argues, the “public sphere” actually comprises multiple publics with
their own norms, needs, and values ​(Fraser, 2007)​. Fraser notes that these publics may have
varying—and sometimes conflicting—priorities. Thus a multifaceted view of the “public good”
is necessary for the advancement of equity, rather than smoothing over differences to create a
homogenized view of “the public” with a unified “public good.” Such homogenization will
marginalize minority communities by prioritizing the majority’s views. Such a multifaceted
perception of the public sphere is a key component in my conception of ritual communication, as
it underscores the reality that the same community engagement efforts will look different from
the perspectives of different groups. This is key in the advancement of health equity, where it is
necessary to examine how community engagement efforts address the priorities, needs, and
perceptions of people within medically underserved communities. Further, it prompts an

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examination of the ways that funding, research, and publication turn public health professionals
into a separate audience for community engagement programs as well.

Implications.
By utilizing these previous concepts in the field of public health, this ritual view of
communication prompts an examination of community engagement from the lens of multiple
populations, teasing out differing audience responses, and examining the power these audiences
have in shaping ongoing communication efforts. For example, consider a hospital-run
community engagement program around breast cancer screening. A hospital running such a
campaign may examine links between campaign exposure and provision of mammograms to
evaluate their efforts. A patient exposed to the campaign may evaluate it in terms of how the
hospital facilitated follow-up to the results of their own screenings. Finally, an advocacy group
may evaluate the campaign in terms of the resources that flowed into communities bearing the
brunt of breast cancer disparities. Synthesizing these differing definitions of success into a
multifaceted analysis could reveal the synergies, conflicts, and social roles that together paint a
more accurate picture of the campaign than any one of the viewpoints could produce on their
own. In this case, we might look at how well the campaign met each group’s priorities, as well as
what long-term outcomes are likely if this campaign is taken as a successful model for the
hospital to follow in the future. Who will be served? Who will have decision-making power?
Who will be left out? These are the kinds of questions that a ritual view of communication will
promote, which can help advance health equity. This scope of knowledge and action has more
potential to reduce health disparities compared to the scope of questions focused solely on the
effects of transmitting information.
This view of communication is equipped to address the areas that a transmission view of
communication ignores, as I outlined in the previous chapter: power, feedback loops, and
politics. This can shed new light on communication efforts aimed at increasing knowledge or
shifting perceptions of health topics. Whether or not the resulting dynamic is intentional, these
efforts maintain a specific relationship between the target communities and the institution
reaching out to them. A transmission view of communication would leave this dynamic
unexamined. A ritual view of communication would expand research and evaluation programs

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that inform the judgement of whether the community engagement efforts were successful. How
was decision-making power distributed in the work? What was the representation like for
medically underserved communities? How did this effort interact with other social issues and
institutional interactions with the target communities? Did the project make any headway on
social determinants or political issues contributing to the public health issue at hand? While
much work remains to be done on how to answer such questions, it is necessary to begin with
conceptions of research and community engagement that support researchers to ask them in the
first place.

II. A2: What are current approaches to reconfiguring research and community
engagement in public health?

The ritual view I’ve outlined focuses on how varying actors maintain a social structure
through communication. Thus it suggests the need to incorporate knowledge from the positions
of all actors involved in order to accurately understand and intervene in that social structure for
improved health outcomes. This has notable implications for public health research, program
planning, and evaluation alike. There is a need to move beyond communication research focused
solely on how well specific information travels through specific pipelines. There is a need to
move beyond notions of professionalized expertise as a privileged viewpoint in planning
community engagement efforts. There is a need to move beyond the pursuit of accurate
evaluation of community engagement through a singular, so-called objective analysis. So, what
does this ritual view of communication look like when acted upon in public health? Essentially,
it looks like participatory research.
Public health professionals currently recognize the need for more collaborative and
participatory processes. Though not framed in terms of communication and ritual, there are a
variety of participatory research frameworks that aim to better integrate community engagement
into research for the sake of more impactful research outcomes. Here, I will discuss several
notable frameworks that have gained support in the field of public health in recent decades:
participatory action research (PAR), community-based participatory research (CBPR), citizen

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science, and participatory design. Then, I will discuss how framing these research frameworks
through a ritual view of communication reveals opportunities to strengthen such work.

Participatory Research Frameworks

Figure 9:​ A model of action research from Greenwood and Levin. It highlights an insider/outsider
division and the importance of communicative arenas for generating knowledge and acting on solutions
(Greenwood & Levin, 2007, p. 94)​.
Participatory action research (PAR) is one such framework that proposes a
reconfiguration of the power relationships between subjects, researchers, and society. In essence,
PAR proposes that marginalized communities learn about the world through intervening in it for
social change. Its professional recognition in the US dates back to Kurt Lewin’s work in the
1940s, when he advocated for “action-research” as a means to integrate social science into a
cycle of action, research, and training to solve cyclical issues facing minority communities
(Lewin, 1946)​. Modern manifestations of PAR also have roots in Paulo Freire’s work in the
1960s to facilitate education and social change in oppressed Brazilian communities through
political consciousness ​(Freire, 1970/2005)​. As PAR has gained a wider following in academic
settings, researchers have theorized what it means for professionals to enact the values of PAR in
their work. Greenwood and Levin formally describe action research in terms of knowledge
co-generation between insiders who “own” a problem and outsiders who are professional

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researchers facilitating a co-learning process to solve it ​(Greenwood & Levin, 2007, p. 93)​. They
describe a communication arena as a key component of action research, in which insiders and
outsiders carry out a process of co-learning and reflection that drives cycles of progress towards
solutions ​(Greenwood & Levin, 2007, Chapter 6)​. Similarly in public health, PAR is understood
as a deeply reflective process, in which participants seek to improve their own practices while
taking action to examine and change a real-world system ​(Baum et al., 2006)​. The earliest paper
archived in PubMed employing the term “participatory action research” is a 1991 publication
arguing for PAR as a necessary part of self-help research to produce better, more useful
knowledge for scholars and the self-help movement alike ​(Chesler, 1991)​. Photovoice is perhaps
the most widely known method associated with PAR in public health, using community-led
photography and storytelling for both qualitative research purposes and advocacy around
community issues ​(Wang, 1999)​.

Figure 10:​ A model of the factors influencing CBPR projects from Wallerstein et al. It acknowledges the
cyclical nature of research impacting the context in which partnerships form ​(N. Wallerstein et al., 2008)

Related to PAR but less explicitly focused on issues of political consciousness,

community-based participatory research (CBPR) is a framework that promotes equitable
partnership between researchers and the population being studied at every step of the research
process. Barbara Israel is a seminal figure in the use of CBPR in public health, with a 1998 paper
cited over 1100 times in PubMed archives ​(B. A. Israel et al., 1998)​. She has continued to
advance CBPR methodology in public health, examining: the sustainability of CBPR
partnerships ​(Barbara A. Israel et al., 2006)​, CBPR’s potential to eliminate health disparities

71
(Barbara A. Israel et al., 2010)​, and CBPR principles ​(Barbara A. Israel et al., 2018)​. See
Wallerstein and Duran’s work for more insight into the history and theory of CBPR ​(Nina
Wallerstein & Duran, 2018)​. CBPR has gained structural recognition in the form of the CBPR
Research Program run by the National Institute on Minority Health and Health Disparities
(National Institutes of Health, 2018)​. The program provides project funding through U01
Cooperative Agreements Research Project Grants “to enhance community capacity in research
for which they will directly benefit; support collaborative intervention projects addressing health
disparities; and accelerate the translation of findings into improved health and health outcomes.”
(National Institutes of Health, 2015)​.

Figure 11:​ A model for conceptualizing citizen science from Jordan et al. This model presents several
spectra of alignment for such work: public participation, impact on self-identification with respect to
science, educational goals/context, and impact on systems of knowledge production ​(Jordan et al., 2015)​.

Citizen science is a participatory research framework that is less focused on a concept of

equitable partnership than PAR/CBPR. It focuses on collaborations with public audiences, but
does not center questions of equity in the relationships between professional researchers and
other collaborators ​(Wiggins & Wilbanks, 2019)​. Although members of various publics have
long gathered scientific data, the earliest publication employing the term “citizen science”
archived in PubMed is a 2003 paper about The Fish Survey Project carried out with the help of
SCUBA diving communities starting in 1993 ​(Pattengill-Semmens & Semmens, 2003)​. This

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example illustrates the niche that citizen science has risen to fill within the context of
professionalized science. Citizen science provides a framework to address large-scale research
questions that are impossible or impractical to address without a large scale of cooperation.
Citizen science can also address localized research questions that may not garner the professional
recognition typically called upon to justify resource allocation for a larger professional research
team ​(Miller-Rushing et al., 2012)​. The US federal government supports a community of
practice, maintains resource toolkits, and coordinates with academic and industry partners to
support citizen science through the Federal Community of Practice on Crowdsourcing and
Citizen Sciences (FedCCS), supported through the Citizen Science Act of 2016 ​(Federal
Community of Practice for Crowdsourcing and Citizen Science, n.d.)​. Part of this work happens
on the ​CitizenScience.gov ​platform, which includes access to research toolkits and a catalog of
citizen science and crowdsourcing projects seeking volunteers. Here, the federal government
highlights the opportunity for citizen science to address societal needs and accelerate scientific
progress ​(U.S. General Services Administration, n.d.)​.

Figure 12:​ A model of co-design compared to classical design processes, from Sanders and Stappers. The
classical design process separates users, researchers, and designers into distinct roles with distinct tools.
Notably, the user is a passive subject of observation. Co-design does not prescribe such distinct roles,
with users, researchers, and designers gathered together around the same set of tools. ​(Sanders &
Stappers, 2008)

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 Within public health, participatory design frameworks have been extending the rise of
collaborative and participatory processes into translational work as well. Participatory design is a
framework that proposes input from end-users in every step of a development and deployment
process. It originated among Norwegian union workers in the 1970s advocating for more control
over the introduction of new technologies in their workplace ​(Kuhn & Winograd, 1996)​. Though
it has been around for decades, the rise of participatory design in public health is much more
recent, with over half of the existing studies archived in PubMed employing the term coming out
since 2016. An early use of a self-described participatory design process in a clinical setting
reveals the tensions in using such frameworks in professionalized research fields. Although
Tovar et al. describe their design process of case management software as participatory, the only
form of user input was through formative research interviews ​(Tovar et al., 1991)​. The intended
users provided information, but did not make decisions around the development or deployment
of the technology in their workplace.

Implications for the Future.

As outlined above, many participatory research frameworks have roots in political
movements and efforts to dismantle oppressive power structures. There are limitations to what
this might mean in the space of federally funded research projects. However, it is clear that the
values of participatory research have impacted the US federal government’s approach to public
health research. The ​All of Us​ research program, for example, frames research program
participants as partners. Its governance structure includes participant representatives who provide
input on the program through advisory roles ​(National Institutes of Health, n.d.-a)​. In drawing on
the methods and language of participatory research frameworks, ​All of Us​ illustrates the
opportunities of collaborative and participatory research by government-funded institutions.
Public service provision can respond directly to research findings. Research questions can
respond directly to the needs of project community partners. With a focus on partnering with
medically underserved communities, this project can be an engine for health equity. However, in
drawing on participatory frameworks, the PMI also becomes part of an ongoing tension between

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the promises of participatory research and its implementation in real-world professionalized
settings.
Existing scholarship on CBPR suggests that many aspects of the US health research
infrastructure inhibit a focus on the social structures formed during health research. For example,
short-term evaluations miss the long-term ripple effects of trust-building and power-sharing
(Jagosh et al., 2015)​. Typical funding availability and timelines do not match the long,
unpredictable processes of forming relationships and maintaining research partnerships in
medically underserved communities ​(Barbara A. Israel et al., 2006)​. Further, building research
capacity among community partners can fall outside the realm of standard research job
descriptions and funding categories ​(Strickland, 2006)​.
At a broad scale, this implies the need for funding structures that are more supportive of
research that accounts for the relationships and social structures that it forms. The federal
government has specific funds for such research, such as the National Institute on Minority
Health and Health Disparities CBPR Research Program. However, there is room to expand the
evaluation methods and funding guidelines through a ritual view, to better promote relationship
building and capacity building as well as capture their ripple effects. For example, Clinical and
Translational Science Centers (CTSC) could benefit from a ritual view of communication in their
planning and evaluation processes, as a key goal of a CTSC is to engage patients and
communities in every phase of the translation process from scientific discoveries into clinical
breakthroughs ​(National Center for Advancing Translational Sciences, 2018)​. What kinds of
changes do partners hope to see in the relationship between clinical/research institutions and
patients? How will these manifest in capacity-building, co-learning, institutional policy, decision
making process, hiring practices, and more? Incorporating these kinds of questions into the
formal analysis of funded centers could help account for a lot of the work already required to
achieve community engagement goals.
On a program level, this also implies that the Precision Medicine Initiative can promote
health equity through such changes in its own partnerships, as well as in its terms of access to its
research databases. What if the evaluation process for projects seeking access to ​All of Us d​ ata
included a focus on community benefit agreements with local partners? What if potential impact

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was judged in part by how the research process would impact a community experiencing health
disparities in the area of health being researched? What if ​All of Us​ community partners were
part of review boards and received project progress reports? There are myriad ways that the
Precision Medicine Initiative could scaffold the planning and evaluation of community
engagement efforts to incorporate a ritual view of communication to advance health equity.
Alongside breakthroughs in medical treatments, such a regulatory breakthrough could serve as a
model for health research more broadly.

II. B: What is the Health Equity Ritual Model of Community Engagement?

A ritual view of communication focuses on the relationships and social structures that a
communication process maintains. This is a fundamental shift in focus from the dominant
transmission-focused lens of communication. In public health, this implies that a ritual view of
communication has broad-ranging impacts on all aspects of community engagement, from
planning to evaluation. As noted above, participatory research methods can serve as models for
implementing such a framework. However, these research frameworks face difficulties in
aligning with typical funding structures and grant timelines. There is a need for broad change
across funding opportunities to better address community engagement through a ritual view to
advance health equity.
That being said, a ritual view of communication can still help advance health equity on an
individual partnership level. Absent federal guidelines or clear metrics of evaluation, an
academic community partnership can still leverage a ritual view of communication to evaluate
their work. Here, I present a conversational tool meant to assist ongoing academic-community
partnerships do just that. Following the example of Frauenberger et. al in pursuing rigor in
participatory design, I propose a tool-to-think-with ​(Frauenberger et al., 2015)​. This tool is meant
to help academic and community partners reflect on their work as it is, what shaped it, and what
room there is to further advance health equity.
The tool I propose is called the Health Equity Ritual (HER) model of community
engagement. It is meant to help guide academic-community partnerships in their evaluative
conversations. It is not meant to function as an academic evaluation framework, such as the

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conceptual framework Ward et. al proposed for CBPR research ​(Ward et al., 2018)​. Rather, it is
a conversational tool that can help academic and non-academic research partners engage in
evaluative conversations about their work using the same lens. Ideally, partners will come to the
table with various kinds of information and experience with which to judge their work. As such,
this model does not just include guiding concepts and questions. It also includes a series of steps
and frameworks of interaction to guide the interpersonal aspects of conversation. The aim is to
encourage sharing of varying viewpoints and sources of knowledge, even if they are in conflict
with each other. In this way, the HER model leverages a ritual view of communication by
focusing on the kinds of power that various stakeholder groups have in shaping the partnership.
The design of this model further incorporates a ritual view of communication to help
shape the social structures formed at an interpersonal level within the partnership itself. The
HER model comprises two paper-based tools to help guide conversation. The first tool is a
papercraft kaleidocycle, meant to reflect the cyclical nature of community engagement while
providing a physical prompt to help guide an evaluative conversation. The second tool is a zine,
made on the back of an executive summary of the partnership’s work. It is meant to guide
self-reflection and documentation throughout the conversation. Together, these tools incorporate
a ritual view of communication into evaluative conversations while providing a common
language to do so. See Appendix C for instructions on assembling the HER model pieces.

II. B1: Tool 1. Papercraft Kaleidocycle.

The first component of the HER model is a representation of the community engagement
process as a 4-phase cycle. Media studies and cultural studies theories of communication inform
this representation, which aims to tease out the varying viewpoints and priorities of academic
and community partners in public health research.

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 Conceptual Design: 4-Phase Cycle

Figure 13:​ Kaleidocycle portion of the HER model of community engagement. Icons courtesy of the
OpenMoji Project. This tool is available under a CC BY-SA 4.0 license.

The HER model divides community engagement into 4 phases: planning, acting,
watching, and reacting. While real-world community engagement does not always progress in
such a cleancut linear fashion, this model simplifies the representation of such work so as to
prioritize usefulness in teasing out the social structures of real-world partnerships. As such, each
phase includes 3 prompts to tease out the impact and limitations of academic-community public
health project partnerships from stakeholders’ varying viewpoints and social positions. As this
tool is meant to prompt discussion about equity in academic-community partnerships, it is
especially important that members of medically underserved communities are part of the
conversation. When using this tool, partners should acknowledge that stakeholder groups,
including medically underserved communities, will not all share the same priorities or
viewpoints on public health topics. Thus, even in deeply collaborative partnerships with
community representation, there will likely be unheard voices. With this caveat in mind, the
HER model can nevertheless help tease out the current strengths, weaknesses, and impact of an
academic-community project.

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 Figure 14:​ The “Planning” phase of the HER model of community engagement.

Planning.​ The overarching question of the planning phase is: what’s important? What
goals and scope of focus has been baked into a particular project from the beginning? This phase
of community engagement draws on Stuart Hall’s concept of encoding. Structural factors,
existing frameworks of knowledge, and human decisions influence the intended message of a
communication campaign ​(Hall, 1973/2007)​. In public health, these structural factors include
available funding and professional pressures. These factors incentivize certain kinds of research
or a focus on specific health topics. Existing frameworks of knowledge include prominent
theories and existing research. These factors highlight what kinds of research questions or best
practices to employ. Human decisions include the personal motivations of researchers and
community partners, as well as the priorities of specific grant reviewers or program managers.
These factors directly influence which options a program pursues. In sum, structural,
knowledge-based, and human factors influence the priorities of a specific community
engagement effort. They may incentivize formation of research questions with community
partners focusing on a specific health topic, for example. Or they may incentivize academic
researchers looking for a community partner to help recruit participants in an established
protocol. While the planning phase does not entirely determine a project’s outcomes, it does
shape definitions of success, allocation of resources, and projected timelines. Thus the planning
phase has serious implications for health equity, as it shapes the kinds of community
involvement a project will actively foster. As such, the HER model of community engagement
prompts stakeholders to reflect on the varying sources of knowledge and priorities that inform
their work even before they formalize a project:
● Prioritize: what does each stakeholder group prioritize? How do these compare to what
has been prioritized in the partnership?

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 ○ There may be differences in project priorities across stakeholder groups. For
example, academic stakeholder groups may be more concerned with research
rigor than community-based organizations (CBOs), which may prioritize
providing services to underserved communities.
○ Personal priorities will influence the project as well. For example, a research
trainee may only be employed part-time and thus will count on this project alone
to provide them with their first academic publication. A more senior researcher
may view the project as a relatively minor part of their portfolio. One CBO
partner may view the project as a low-effort way to maintain a relationship with a
particular research lab, while another may have sought out this opportunity to
increase their research capacity.
● Know: what does each stakeholder group know about the topic at hand? How did these
kinds of knowledge each inform the partnership?
○ There are varying kinds of knowledge that can inform a community engagement
strategy. Academic researchers will have the toolkits to easily draw on examples
from existing research papers. Advocacy groups will have an understanding of the
levers of change and available strengths in their community. Individual patients
may know the reputations of various medical providers and institutions in their
community.
● Trust: who does each stakeholder group trust regarding the health topic at hand? How
were these various sources incorporated into the partnership’s work?
○ Different levels of trust in various sources of information and services will inform
community engagement. Public health professionals may be reluctant to provide
community members information that is not coming directly from a recognized
source such as the NIH. Meanwhile, centering a distant government agency may
be less comforting for medically underserved communities compared to a trusted
local community member like a librarian or a teacher.

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 Figure 15:​ The “Acting” phase of the HER model of community engagement.

Acting. ​The overarching question of this phase is: who’s involved? Who is in what roles
in the project, and what are the methods of accountability?
● Represent: who is representing various stakeholder groups in the implementation of this
project?
○ There is only so much room in budget, space, time, etc. for participants in an
academic-community partnership. Thus representatives of stakeholder groups will
play a large part in advocating for the needs of their community on the ground.
For example, staff at a community-based organization will likely be focused on
making sure the community engagement work reaches their constituents.
Researchers may be concerned with making sure the project will lead to continued
streams of funding so their team can continue to work on projects that can
advance health equity. It is crucial for partnerships to keep in mind that the
representatives on their team cannot possibly represent the needs and perspective
of everyone in their community. As such, it is important to reflect on the limits of
the project’s representation and the methods through which the partnership can
grow their representative perspectives.
● Rely: to what extent do various stakeholder groups rely on the success of this project, and
why?
○ Varying kinds of reliances on a particular project may contribute to power
imbalances. As such, it is important to reflect on any differences so as to correct
for them in the partnership’s decision making processes. For example, resulting
publications may be just another entry in a CV for researchers at one institution,
whereas it may provide more critical evidence of research competency for others.

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 A CBO may rely more on a specific project to fund the time of an employee than
another CBO with more financial resources. Members of a medically underserved
community may not have much outside access to the benefits that a research study
or public health campaign may offer.
● Take Responsibility: what level of responsibility do various stakeholders have, both
internally and externally? How has this impacted the course of the project?
○ In any group project, there will be a division of responsibilities. For example, it
makes sense to capitalize on the training researchers have received to collect data
and the infrastructure a CBO has in place to mobilize a community. However, it is
important to reflect on whether the partnership is locking certain stakeholder
groups into certain roles unnecessarily. For example, can clients or employees of
a CBO receive training to be part of the data collection process? Can researchers
receive training from CBO partners to learn more about reaching out to medically
underserved communities?

Figure 16:​ The “Watching” phase of the HER model of community engagement.

Watching. ​The overarching question of this phase is: what’s changing? What are the
impacts of this project, and how are they differing across stakeholder groups? This phase of
community engagement programs draws on Stuart Hall’s concept of decoding, in which
audience members draw meanings from a communication campaign. The campaign producer’s
intended message influences this process, but cannot completely control it in the face of
structural factors and individual experience ​(Hall, 1973/2007)​. Similarly, despite best efforts in
the planning and acting phases of a community engagement program, not everyone in a target
audience will take away the intended message. Further, a community engagement program may
not reach entire segments of an intended audience. Health professionals’ evaluation of a program

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may be accurate while not capturing the full scope impact in local communities. These factors
are important, as they impact the lessons learned from this program, shape the narrative around
it, and influence various stakeholders’ next steps. It is important to think about how these
dynamics impact health equity, as a sign of success that should be repeated for one stakeholder
group may not impact another as much. The watching phase of this model is an opportunity to
confirm whether desired project outcomes are having an impact in medically underserved
communities, and whether segments of those communities are being ignored. As such, the HER
model of community engagement prompts stakeholders to reflect on the varying perspectives
that together form a holistic view of the outcomes of community engagement efforts:
● Interact: how do various stakeholder groups interact with the community engagement
work? What are the implications for health equity?
○ One common metric in community engagement work is the number of people in
the target audience reached, and through what methods. It is important to further
reflect on what resources might be required to interact with the program in such a
way. For example, perhaps the most common method of engagement requires a
certain set of physical abilities, language capabilities, or free time. What contexts
might leave part of the target audience underserved, and is there a way to better
serve people in those contexts? Beyond these transmission-focused metrics,
academic-community partnerships can also examine how various stakeholders
interact with the project as it is being enacted. Are specific people gaining
on-the-ground insights while others are focusing on the data collected? How
might this impact various stakeholders’ views when evaluating the process?
● Interpret: how do various stakeholder groups interpret the community engagement work?
What are the implications for health equity?
○ Commonly used survey methods can provide some answers to this question from
the audience point of view. Beyond this set of audience-focused questions, a ritual
view of communication also prompts academic-community partnerships to reflect
on how various partners interpret the project in its final form. Perhaps a project
lives up to the metrics of success as defined in the planning phase, but now there

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 are differing opinions about whether that contributed to the intended impact. It’s
also possible that the focus of the project drifted over time from the initially stated
goals. Or perhaps the project accomplished everything as planned, but some
stakeholders saw missed opportunities to go further. Not all of such concerns will
make it into a final report, an academic paper, or a news article about the project.
However, these views will shape the ways that stakeholders interact with each
other around this project and beyond. It is important to reflect on how the
partnership might privilege certain stakeholders if there is not a serious
consideration of varying interpretations of the same set of results or process
evaluations.
● Inspire: what does the community engagement work inspire in the various stakeholder
groups who interact with it? What are the implications for health equity?
○ One common metric in community engagement work is whether the target
audience took a specific action (e.g. adopted a health behavior, got a screening,
etc.), shifted their perspective on a health topic, or gained knowledge. Beyond
these kinds of metrics, an academic-community partnership can consider what the
project has inspired within its own stakeholders. Did people have to come up with
solutions to problems that were not accounted for in the planning phase? Did the
project foster new ideas or new partnerships on the ground? Were there
co-learning opportunities among stakeholders?

Figure 17:​ The “Reacting” phase of the HER model of community engagement.

Reacting.​ The overarching question of this phase is: what’s next? What lessons are
various stakeholder groups drawing from the previous phases, and what are the implications for
health equity? Again, this phase of the HER model relates to Stuart Hall’s model of
encoding/decoding, in which an audience’s decoding process feeds back into the frameworks of

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knowledge and structural factors that will inform future communication programs ​(Hall,
1973/2007)​. In an academic-community public health partnership this might take the form of
published journal articles that will inform future research. It might also take the form of best
practices for community-based organizations. It might even take the form of increased
community trust in a partner institution or specific health professionals. As such, the HER model
acknowledges the feedback loops inherent in community engagement. The HER model prompts
project partners to think about the long-term impact of their work, not just in the predefined
target audience, but also on their own practice, their personal outlook, and their field.
● Feel: how do various stakeholder groups feel about what happened?
○ Typical evaluations of community engagement work may include a focus on
audience perceptions, satisfaction, etc. In a ritual view of communication,
researchers would want to examine such measures in the context of feelings and
perceptions of various stakeholder groups working on the project. Are there
differences in the levels of pride that stakeholders feel around this particular
project? Was the process more draining for some people than others? Are there
differences in satisfaction of the division of labor and learning opportunities
across stakeholders? Is everyone comfortable with the balance of emotional and
mental labor with the pursuit of the project’s measures of success? Do any related
trade-offs impact certain groups of stakeholders more than others? Such reflection
can help uncover power dynamics in which certain stakeholder groups or are
disproportionately expected to make sacrifices in emotional and mental
well-being. Intervening in such dynamics is especially important in projects
which may seek to draw in more employees or trainees from underserved
communities.
● Learn: what did various stakeholder groups learn from the project?
○ Lessons learned from an academic-community partnership are often written up in
academic journal articles and grant reports. If the partnership has access to
traditional mass communications resources, they may also share lessons learned
in press releases or news media coverage. Due to conventions in such media,

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 these lessons will likely seek to present a definitive, objective point of view on the
partnership’s work. In a social process, however, a singular objective view is
impossible. While there may be strategic reasons to attempt to present such a
view, it is important that an academic-community partnership not internalize this
way of thinking. What did stakeholder groups learn from each other? What did
stakeholders learn about each other? Was there co-learning in place throughout
the process? Did one stakeholder group learn something another already knew?
● Improve: how do various stakeholder groups want to improve on this project?
○ Various stakeholders will be able to provide differing insights into what
improvements can be made to improve the partnership’s work, or to improve
future iterations of the project at hand. As in the previous phases, it is important to
reflect on the insights that differing kinds of knowledge and differing social roles
can offer. This prompt is also an opportunity to reflect on the ways that the
partnership’s work can further advance health equity. What hurdles to access can
stakeholders remove? What extra outreach efforts can partners conduct? What
power dynamics can the partnership intervene in? These are the kinds of
improvements that can help improve the ability of academic-community
partnerships to better serve medically underserved communities.

Physical Design: Conversational Tool

The HER model of community engagement is meant to exist as a physical object. It is to

be cut, folded, and glued into a kaleidocycle—a 3-dimensional papercraft object that a user can
continually rotate around itself. This is meant to represent the cyclical nature of community
engagement and communication, as well as provide a physical prompt to help pace a
conversation. The discussion should only focus on one phase at a time, and should not continue
past the current phase until everyone has flipped their kaleidocycle over to the next one.

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 Figure 18:​ A demonstration of the HER model’s kaleidocycle rotating around itself.

As a tool meant for evaluative conversations in academic-community partnerships, each

participant in such a conversation is meant to have their own kaleidocycle. Every participant is
meant to reflect on the prompts for each phase, relying on the single-word prompt and icon to
spark their own personal reflection. As such, representative voices from each stakeholder group
should be at the table to speak to each prompt. This aspect of the HER model draws on Nancy
Fraser’s work, highlighting the need to tease out varying viewpoints of public good and maintain
space for dialogue in which conflicts can be explored—not necessarily resolved into a single
homogenous view ​(Fraser, 2007)​.

II. B2: Tool 2. Zine.

The second tool in the HER model of community engagement is a zine template. It is
meant to act as a reflection and documentation tool in an evaluative conversation in an
academic-community partnership alongside the kaleidocycle above. It is designed to be made on
the back of an executive summary, press release, or otherwise official description of an
academic-community partnership project. Project partners then cut and fold the single-page
summary to make a 6-page zine with a front and back cover.

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 Figure 19: ​Zine portion of the HER model of community engagement. Icons courtesy of the OpenMoji
Project. This tool is available under a CC BY-SA 4.0 license.

Figure 20: ​The front and back covers of the HER model of community engagement zine.

At the start of an evaluative conversation, academic and community partners can fill in
the front cover with a drawing representing a success of their current project. Then they can fill
in the back cover with a drawing representing a failure of their current project.

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 Figure 21: ​Pages 1 and 2 of the HER model zine.

As the conversation continues to the planning phase and acting phase of the project, they
can use the first two pages of the zine to take brief notes.

Figure 22:​ The pause-and-reflect spread of the HER model zine.

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 Then, all participants are invited to pause to reflect on how the conversation is going,
through a combination of drawing and writing.

Figure 23: ​ The final two pages of the HER model zine.

Finally, participants can move onto the watching and reacting phases of the HER model
of community engagement. The last two pages of the zine provide a space for each participant in
the conversation to take notes.
By inserting pauses and multiple modes of reflection into an evaluative conversation
between project partners, this zine aims to intervene in typical conversation flows that may serve
to reinforce in-group social roles. By giving each participant the power to create a representation
of their own narrative around the partnership’s work, this zine aims to act against the idea of a
singular objective truth about the public health impacts of community engagement. The resulting
zine serves as a documentation of each participant’s perspective on a collective process. It can
later provide succinct symbols of partnership and project dynamics. It can inform process

90
improvements for future partnership conversations, as well as potential reconfigurations of
agenda-setting and decision-making power.

II. C: Conclusion

In ​Pedagogy of the Oppressed,​ Paolo Freire frames dialogue as a form of co-creation, not
a transfer of ideas. He calls dialogue transformational, describing how the act of naming the
world transforms and humanizes it. As such, it is important that marginalized people have the
power to meaningfully contribute to the conversation. Right now, such groups face structural
barriers to joining in these processes, including research. Beyond that, various forms of prejudice
and discrimination make it harder for their voices to be hard. This means that bringing different
people together in a co-creative community not only requires fixing structural inequalities. It also
requires love, humility, and faith in people ​(Freire, 1970/2005, Chapter 3)​.
In my experience, public health professionals don’t often talk about warm and fuzzy
emotions. But it seems clear to me that seriously believing that we can move from an inequitable
world to an equitable one requires a fair amount of faith in humanity. To devote a life’s work to
reaching such an abstract, far-off goal requires a fair amount of love. To form partnerships and
constantly submit yourself to scrutiny from peers, funders, and public audiences requires a fair
amount of humility. While the tools that public health professionals use to act on these feelings
might require years of specialization, the underlying motivations are more universal. I hope that
a ritual view of communication in public health can draw attention to the personal and emotional
sides of health as a base on which co-creative communities can form.
In this chapter, I proposed one tool that can help maintain such co-creative communities:
the HER model of community engagement. In the next chapter, I describe the process of
designing a community engagement program acting on a ritual view of communication through
co-creation.

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 CHAPTER III. A PEOPLE’S GUIDE TO PRECISION MEDICINE.

Situating myself between the arts and public health, I try to have the best of both worlds.
I imagine new futures, reframe the present, and critique existing social structures through
attention-grabbing means aimed at promoting dialogue. At the same time, I aim to help improve
health outcomes in real-world communities. Knowledge isn’t just an object waiting to be found
and collected. It’s a living thing to be nurtured in a community. Communication isn’t just a way
to fill people’s heads with ideas. It’s a way to formulate and refine those ideas together. The act
of communication can have positive impacts through the formation of social relationships, the
sharing of experiences, and the co-creation of knowledge. I believe these are vital processes in
the advancement of health equity. And I aim to use this view of communication to make more
space for underserved and underrepresented voices in health research.
I know I can’t accomplish this alone. No one can. As discussed in the previous chapter,
public health research already draws on participatory research frameworks to create new kinds of
learning communities that can accomplish these lofty goals. This allows participants to help each
other tie together research with advocacy and community engagement. In my graduate studies in
comparative media studies, I’ve been able to see the ways that media makers accomplish similar
goals using frameworks of co-creation. When it comes to health equity, I think this framework is
quite useful as it is a reminder that at the end of the day, something needs to be created. It’s not
enough to critique existing processes and social structures. It’s not enough to learn more about
the exact ways that health disparities manifest. It’s not even enough to develop evidence-based
interventions and best practices. Though health equity can be a bit of an abstract concept, it will
look like opportunities for health in every community. Where those opportunities do not
currently exist, they will need be created. That is not something a medically underserved
community can do completely on its own, and it’s not something a government agency, hospital,
or research institution can do completely on its own either.
In this chapter, I draw on this concept of co-creation to imagine what will need to happen
on the ground to advance health equity. While a ritual lens can help explain the full scope of
work involved in such a project, co-creation is a useful shorthand for what this looks like.

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III. A: Abstract.

Aims.
With this project, I aimed to develop the “People’s Guide” media-based community
engagement program, around the topic of precision medicine in US research university settings.
This project explored what community engagement could look like if it employed multimedia
modes of understanding to reverse typical flows of knowledge in academic-community
exchanges. The intended purpose of the resulting program-in-development is to intervene in
public health partnership dynamics to better facilitate responsiveness to the needs of medically
underserved communities.

Methods.
I used multimedia modes of engagement to curate knowledge from members of
underrepresented communities in STEM research fields. These included dialogue-based
workshops to understand precision medicine and design-based workshops to envision what such
research could lead to. I then conducted interviews with professionals who have direct links to
the issues the workshops surfaced. I compiled the interviews and workshop outputs into an
online zine (informal publication) for use in academic workshops. This second wave of
workshops included medical students, doctoral candidates, postdocs, and professional research
scientists. These workshops incorporated zine articles for discussion and brainstorming prompts,
alongside a lightning talk on the ritual lens of communication. The outputs of these brainstorms
were compiled into the final component of the zine for publication and dissemination among
contributors.

Evaluation.
This project employed a developmental evaluation framework to inform key
developments of a program logic model, including: establishing program activities, defining
desired outcomes, and identifying target audiences. Evaluation methods included surveys of

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academic workshops participants, content analysis of workshop materials, and exit interviews
with select zine contributors.

Results.
The developmental evaluation resulted in a logic model and network diagram to guide
further program refinement and testing of outcomes and assumptions. The target communities
for this program are public health partnerships that unite students/trainees, academic researchers,
and those working in community-based organizations. While this project focused on the topic of
precision medicine, the resulting logic model allows for the topic of interest to respond to
community partnership needs.

Significance
This project highlights the potential of media-based community engagement to disrupt
typical flows of knowledge in public health research partnerships. It also highlights the potential
of developmental evaluation within public health.

III. B: Design Brief.

III. B1: Background.

Precision medicine is a data-driven approach to disease treatment and prevention that
takes into account a person’s individual combination of genetic, environmental, and behavioral
factors ​(Genetics Home Reference, 2015)​. The concept of precision medicine is multi-faceted
and its relationship to health equity is yet to be defined. National efforts like the Precision
Medicine Initiative promise to improve population health by improving healthcare and disease
prevention for everyone in the US ​(Collins & Varmus, 2015)​. A lack of participant diversity in
existing genomic research, however, raises serious concerns about the potential negative impact
precision medicine techniques may have on health equity ​(Martin et al., 2019)​. Beyond
representation, structural issues of power contribute to an environment in which biomedical
research findings may be misinterpreted and misused to contribute to the false essentialization of
biomedical factors related to the social identities of race ​(Kahn, 2008)​, as well stigmatization of

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medically underserved communities ​(Dingel & Koenig, 2008)​. Further, a focus on the genetic
aspects of precision medicine has cast doubt on the compatibility of this individualistic approach
with the structural and population-level focus of public health ​(Chowkwanyun et al., 2018)​.
However, proponents of “precision public health” argue that it can successfully bridge
population-level interventions with personalized health concerns ​(Chowkwanyun et al., 2018)​.
The relationship between precision medicine and health equity remains unclear.
However, it is clear that health equity in an era of precision medicine will require community
engagement that intervenes not only in the diversity of research samples, but also in the power
dynamics present in academic research. This project thus explores what such community
engagement efforts could look like. As such, this project operates under a transformative
research paradigm, aiming to produce knowledge that can help reconfigure social systems that
marginalize underprivileged groups ​(Mertens, 2007)​.

Medically Underserved Communities.

This project focuses on the potential of a media-based community engagement program
to make research partnerships more responsive to medically underserved communities’ needs. I
define a “medically underserved community” as one with societal, economic, cultural, and/or
linguistic barriers to health. In the US this includes: people experiencing homelessness, migrant
workers, undocumented immigrants, non-English speakers, people with low incomes, people
without health insurance, people in geographically isolated areas, gender and sexual minorities,
Indigenous nations, people of color, and people with disabilities. Notably, this is a more
expansive version of the definition of “medically underserved areas/populations” by the Bureau
of Health Workforce, which focuses on access to healthcare providers ​(Bureau of Health
Workforce, 2019)​.
The concept of a “medically underserved community” is useful to orient public health
programs towards health equity. It is helpful to have language that can funnel resources to people
experiencing inequities that negatively impact their health. However, using such a unifying
concept presents its own challenges, as medically underserved communities are not
homogeneous. Structural changes can eliminate health disparities. However, individual programs
will likely not make sweeping structural changes. Instead, they will work with limited resources

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on limited timelines, leading to a focus on specific health topics and community members. As
priorities differ between and within medically underserved communities, it is important to be
clear about who exactly a program is reaching. This reality typically contributes to highly
targeted interventions and community engagement programs that focus on reproducibility among
similar demographic groups. This project focused instead on creating a community engagement
program that is adaptable to many contexts.

Sources of Knowledge.
A transmission view of communication focuses on communication as a means to transfer
information, whereas a ritual view focuses on communication as a means to maintain
relationships and social structures ​(Carey, 1989)​. As discussed in Chapter 1, a transmission view
of communication dominates in public health communication research and practice. This
contributes to an environment of health disparities by focusing communication efforts on the
efficiency of information transfer, rather than the equity of relationships between public health
institutions and medically underserved communities. This project aims to express a commitment
to health equity by employing a ritual lens of communication to intervene in the relationships
and social structures formed in community engagement. As such, this project aims to rethink
what it looks like to be recognized as a producer, interpreter, and wielder of knowledge in public
health by experimenting with the tools of a journal and a journal club.
Having a recognized platform to produce, interpret, and wield knowledge is an immense
privilege. Recognized knowledge creators have the power to shape the evidence that informs
policy, social programs, and further research. Recognized knowledge interpreters have the power
to draw on evidence to create narratives that inform public opinion, media portrayals, and policy
goals around social issues. Recognized knowledge wielders have the power to use evidence to
create common knowledge that informs further research questions, worldviews, and interpretive
frameworks. Disparities in access to recognized tools of knowledge threaten the well-being of
groups marginalized on the basis of intersecting identities, such as women of color. For example,
Crenshaw highlights how feminist and antiracist policies have actually intersected to marginalize
women of color, leaving them vulnerable to structural and personal violence ​(Crenshaw, 1990)​.
Rectifying disparities in the professionalized research workforce is a worthy goal that can help

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address this issue. However, there is also a parallel need to expand notions of expertise to better
include the kinds of knowledge that accumulate through firsthand navigation through structural
obstacles to health equity. Health equity depends on a democratization of science and cognitive
justice, as Santos, Nunes, and Meneses describe it ​(Boaventura et al., 2007)​. As such, this project
sought to establish methods that can operate within public health research partnerships to
broaden the scope of recognized expertise.

Media Interventions.
This project employs a multimedia approach to communication, incorporating design
activities, illustrations, and personal stories into a public health publication. Participatory
research methods like PhotoVoice have shown value in bridging knowledge production,
community engagement, and advocacy in public health ​(Wang, 1999)​. Outside the realm of
research, media arts have proven themselves powerful tools for sparking social change. One
significant example is the National Film Board of Canada’s “Fogo process” of using
participatory documentary filmmaking as a way for communities to surface problems and
generate productive dialogue around them. The Fogo process has also proven useful in settings
like hospitals and prisons, wherein conversation is difficult between people in rigid roles like
patients/providers and guards/prisoners ​(Wiesner, 1992/2010)​. Importantly, PhotoVoice and the
Fogo Process both highlight the importance of participatory processes and the collective analysis
that happens around media products. By situating these participatory methods in conversations of
power, such programs expand their impact by teaching audiences to listen ​(Marjoribanks et al.,
2013)​, putting people in new social roles ​(Atkinson & Rosati, 2013)​, and expanding power
(Ryan et al., 2013)​.

III. B2: Methods.

With this project, I focus on the development of a two-phase community engagement
program titled, “People’s Guide.” This program revolves around a zine (an informal,
self-published publication). Phase 1 focuses on producing the zine through workshops and
interviews with members of medically underserved communities. Phase 2 focuses on using the
zine in journal club workshops. This project explores the relationship between the two program

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phases, resources required to run both phases, and potential program outcomes. I employed a
developmental evaluation framework to continually track the development of the program and
incorporate process improvements along the way. As such, I approached implementation and
evaluation as a tightly connected reciprocal pair. Evaluation findings informed key program
developments, and developments informed evaluation strategies.

Context.
This project took place from April 2019 to April 2020. I conducted this work as part of
my master’s thesis in Comparative Media Studies at MIT. As such, I did not conduct this work in
the context of an ongoing public health research partnership. On one hand, this is a limitation of
this current project, as such a partnership is the intended context for this program. On the other
hand, this lack of formal structure facilitated this project’s flexibility. This allowed key program
developments to rapidly respond to real-time observations and feedback. A Priscilla King Gray
Public Service Fellowship supported my work on this project from June 2019 to August 2019.

Research Ethics.
This project’s activities were exempt from internal review, as documented by the MIT
Committee on the Use of Humans as Experimental Subjects. This project comprised a benign
behavioral intervention, surveys, interviews, and observation in educational settings. As such,
this project presented minimal risk to participants. I informed all workshop participants that
workshop outputs would be part of an online zine and showed them where I would publish it. I
informed student participants that I would credit them collectively, with the opportunity to
identify themselves individually if they wished. Prior to interviews, I informed public health
professionals that I would disseminate their responses online. I informed zine interviewees of my
intended publication process and gave individuals the option to participate anonymously.
Beyond reduction of individual risk, I sought to bring benefits to participants where
possible. I gave additional guest lectures and mentorship to the cohort of summer students I
interacted with. I sought to bring attention to the work of interviewees who wanted their names
published. Future iterations of this project should go further to expand community benefit.

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 Implementation Methods.
Outreach emails. ​I reached zine contributors and workshop participants through my
existing professional networks. I worked with point people in research labs and student groups to
recruit participants for journal club workshops.
Zine hosting​. I created a community space for this project on PubPub, a collaborative
authoring/publishing platform. I structured the content such that this project would result in the
first issue of an ongoing publication. I intended to create a structure to publish future iterations of
this project, workshop guides, and other content alongside the zine resulting from this project.
Student workshops​. I ran a series of 3 workshops with undergraduate students in a
research training program for students of underrepresented minority backgrounds in STEM
research. The first workshop was a dialogue-based session to learn about precision medicine and
identify personal opinions, questions, and critiques of efforts like the Precision Medicine
Initiative. (See “#PMtldr: Precision Medicine; too long, didn't read. (Workshop Guide),” in
Appendix A.)
The next workshop was a speculative design workshop to imagine what precision
medicine technologies could look like if they took the form of everyday objects and focused on
community-building. Participants presented an illustration and brief write-up of their product
designs. This workshop leveraged the opportunity that speculative design offers for learning
about capabilities and issues of a technology ​(Lukens & DiSalvo, 2012)​. This workshop drew on
Coding Rights’ workshop, “Oracle for Transfeminist Technology” ​(Coding Rights, n.d.)​. (See
“Balloons, Bears, Candles, & Sunglasses: Joyful futures of precision medicine,” in Appendix A
for the workshop writeup.)
The final workshop had participants use design fiction to imagine how artificial
intelligence might help people address health issues in the future. ​The workshop focused on
worldbuilding and character building. Participants then imagined a technology that would fit into
the character’s life and their world. ​As part of my mentoring relationship with the students that
summer, I gave students a lecture on participatory research frameworks and gave them feedback
on project proposals. Neither of these final activities is part of “People’s Guide” program

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activities. However, they represent the other kinds of interactions instructors might have with
students in a research partnership setting.
Soliciting article contributions and interviews​. I attempted to include 6 professional
and patient story-based articles in this project’s zine. These were to be in the form of either a
direct submission or an interview. Initial outreach for article submissions resulted in the
suggestion to conduct interviews instead. Thus, I ended up including both options in later article
outreach. I was able to schedule 3 interviews, one each with: a public health researcher, a
community-based organization (CBO) director, and a patient. As there was no budget to
compensate for time/effort, a certain amount of attrition was expected. The interviews that ended
up working out were with individuals that knew me previously. I approached the researcher and
patient interviews in an open-ended journalistic style to gather personal stories. I conducted the
CBO director interview via email, writing interview questions as a means for the director to
share their professional expertise of their community’s needs and assets.
Zine articles​. I edited interview and workshop outputs into an online zine for use in
subsequent journal club workshops.
Journal club workshops​. I conducted 5 workshops with different participants, including:
artists, medical students, doctoral candidates, postdocs, and professional research scientists. The
first workshop with artists focused on gathering feedback and responses to zine articles. The
remainder of the workshops incorporated a curated selection of zine articles for discussion, a
lightning talk on the ritual lens of communication, and a group brainstorming session. (See
Appendix D for the journal club workshop materials resulting from this project.).
Zine publication​. I compiled the outputs of workshop brainstorms into the final
component of the zine for publication and dissemination among all contributors. (See Appendix
A for the zine.)

Developmental Evaluation.
Developmental evaluation is an evaluation framework useful for developing innovations
in complex settings. It is an approach that responds to the dynamic nature of problem spaces that
lack detailed knowledge of factors that contribute to practical, scalable solutions. ​(Patton, 2011,
Chapter 1)​. This approach stands in stark contrast to randomized control trials and other

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summative evaluations, which seek answers about causality and effectiveness of standardized
protocols. It also offers more flexibility to account for dynamic contexts and developing
processes/outcomes in comparison to formative evaluations. Though still being defined,
developmental evaluation shows promise in health promotion settings, especially in settings
where systems are the units of change ​(Fagen et al., 2011)​. I chose a developmental evaluation
framework for this project so as to allow for exploration and learning about the affordances of
this program while still creating it. As the program continues to develop, a developmental
evaluation framework may still be the most appropriate option, as the unit of change is a
partnership network, rather than a specific population or geographic community. Further, as this
program is meant to be adaptable to various topics and partnership settings, it is possible a logic
model for this program may never be linear enough to be suitable for a summative evaluation,
even as the program matures.
In keeping with the developmental evaluation framework, data collection and analysis
was a continual process in this project, informing and informed by key developments. The
evaluation utilized a “What? So what? Now what?” inquiry framework ​(Patton, 2011, p. 231)​.
This framework comprised 3 continual evaluation questions, as Patton outlines:
● What is being developed ​now?​
● What do the results of these developments mean ​now?​
● What do we do with this knowledge ​now?​
Data collection and analysis focused on answering these questions as the program developed,
employing continually shifting methods as the implementation methods shifted over time.

Data Collection and Analysis Methods.

Student Post-workshop surveys. ​Student workshop participants submitted
post-workshop feedback as part of their training program. While this feedback generally
indicated satisfaction with the workshops, it did not provide me with much information to further
refine the student workshops.
Real-time feedback forms​. Journal club workshop participants were given packets to
provide real-time feedback and notes. Due to the small amount of feedback per workshop, I did
not systematically analyze the researcher feedback in Dedoose until the end of the project.

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Instead, I looked at each piece of feedback individually and noted its implications for editing the
workshop.
Workshop facilitator notes​. As the workshop facilitator, I took notes on each workshop.
I combined these notes with post-workshop feedback to continually refine the journal club
workshops. These refinements largely focused on time management and shaping the group
discussion.
Pre/post surveys​. Journal club workshop participants completed pre/post surveys on
their perceptions of the relationship between communication, health equity, and precision
medicine. A content analysis of these documents in Dedoose informed the resulting logic model
and workshop materials for this project.
Exit interviews​. After the final journal club workshop, I interviewed zine contributors
and the coordinator of the final workshop about the program development overall. These
interviews informed the resulting logic model for this project.

Key Developments.
Two-phase program structure​. The original decision to compile student workshop
outputs into a zine alongside interviews for use in journal club workshops was informed by
theoretical work as outlined in the Background section of this brief.
Infrastructure for zine publication: PubPub and style guide.​ This project started off
with the creation of a website to host the zine. I chose PubPub (a project of the MIT Media Lab’s
Knowledge Futures Group) as the platform for this project, owing to its features geared toward
publishing within academic communities. Among the features of interest are: clear authorship
roles, collaborative features, generation of citations, curation of distinct issues, and creation of
CrossRef DOIs for articles. I then created a submission guide for articles, outlining article
categories and a style guide. (See Appendix C for this project’s submission guide.) Starting off
with a platform and a submission guide significantly aided workshop development and content
editing for articles.
Design-based student workshops.​ I decided to run design fiction and speculative design
workshops with students to critically examine the concept of precision medicine while producing
visual/narrative content for zine articles, based off of existing research as noted above,

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 Article solicitation and Interviews​. While editing the design-based workshop outputs
into zine articles, I became unsure of researchers’ willingness to engage with the design
workshop outputs alone. I decided to include articles from viewpoints of professionals and
patients as a way to provide more context for journal club workshops. Two major topics of
discussion during the design workshops were social equity and the unintended consequences of
technology on communities of color. I decided to solicit articles and request interviews to
include perspectives of professionals and patients who could speak to these topics. Although
article solicitation did not yield any submissions for this project, results may differ in an
established research partnership setting.
Three-part journal club workshop format​. The first workshop focused almost
exclusively on zine articles. Its lack of a goal led to a very unfocused discussion. Subsequent
workshops built toward a brainstorming session, informed by the zine articles paired with a
discussion of the ritual view of communication and its implications for public health. The second
and third workshops remained largely the same, but with more focus on what could be changed
about current community engagement practices. The fourth and fifth workshops used a story
from the zine to focus on what community engagement could look like and feel like in a world
with health equity. Exit interviews with zine contributors informed the modification of that
discussion to favor more engagement with zine articles, as described in this project’s resulting
logic model.
​ he 2 journal club workshops conducted with
Determination of ideal program context​. T
research labs led to the most in-depth and personal-level discussions, as well as concrete
brainstorm outputs. Exit interviews indicated a sense of detachment from the process for
interviewees, since they did not have a chance to follow-up with readers, or hear the readers’
responses. Thus, the program logic model and network map indicates specific types of public
health partnerships that bring together students, researchers, and local community members
repeatedly. Examples include NIH-funded U54 grant partnerships, as well as Clinical and
Translational Science Centers.
​ he student workshops produced flexible enough outputs to fit a
Specificity of zine topic​.T
variety of topics. However, journal club workshop participants expressed a desire for focus on

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the context in which to think about precision medicine. In workshops that stated a focus on
immigrant health and precision medicine, participants appreciated discussions in a predetermined
focus area. The ideal level of specificity of the zine topic remains unclear. For now, the program
logic model proposes selecting a zine topic as one of the program activities.
Addition of educational materials, launch event, and advocacy outcomes into the
program logic model.​ These additions to the logic model resulted from exit interviews with zine
contributors. Community-based organizations may have a very specific audience they’d like to
reach with personal stories and research findings, e.g. individual policymakers and funders.
Student professional networks can be nurtured through gathering people together for a launch
event. Students’ own community members may benefit from seeing more didactic educational
materials on the health topic that students examined. I added components to the logic model that
I did not have the chance to test in this project as a guide for future iterations of program
development.

III. B3: Results.

The developmental evaluation resulted in a logic model and network map for the further
development of “People’s Guide” community engagement program. for use in
academic-community partnership settings. While the topical focus of this particular project was
precision medicine, the resulting logic model is intended to fit a range of topics in response to the
contextual needs of the partnership setting at hand.

Logic Model.
A logic model provides a useful definition of what a program is, outlining a linear
relationship between program activities and impacts ​(W.K. Kellogg Foundation, 2004)​. In a
formative or a summative evaluation framework, a program’s logic model will guide evaluation
questions and dictate what evaluators track. In contrast, a logic model may actually be an
outcome of a developmental evaluation, providing a framework to conceptualize a program that
is still developing ​(Lam & Shulha, 2015)​.

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 In this project, the developmental evaluation resulted in a logic model as a heuristic tool,
supplying answers to this project’s 3 evaluation questions with the information available right
now. This logic model highlights a particular theory of change in which the “People’s Guide”
community engagement program makes an academic-community partnership more responsive to
community partner needs and priorities. It enacts this change by outlining specific relationships
between students, professional researchers and community-based organizations. This logic
model describes the anticipated linear relationship between resources, activities, outputs, and
outcomes, which can be refined and better tested in future iterations of this program.

Figure 24:​ Logic model for the “People’s Guide” community engagement program.

Context:

University-based research partnerships bringing together students, professional

researchers, and community-based organizations. Examples include U54 partnerships and
Clinical and Translational Science Centers.

Resources Required:

● Online infrastructure for editing, compiling, and publishing zine articles.

○ This project used PubPub, a project of the MIT Media Lab Knowledge
Futures Group.

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 ● Student cohort.
○ The student design-based workshops depend on knowledge shared during
the dialogue-based workshops.
● Dialogue-based workshop instructor(s) and developer(s).
● Design-based workshop instructor(s) and developer(s).
● Audio-visual and textual documentation of workshop outputs.
○ This project’s student workshops used either audio recording or
worksheets to provide zine article content.
● Journal club workshop facilitator(s) and developer(s).
● Interviewer(s) and Interviewees for zine articles.
● Existing partnership infrastructure and staff.

Activities:

● Establish topic of interest for zine.

● Establish external target audience(s) for zine, if any.
○ Examples include local politicians, medical professionals, students in a
local school, etc.
● Establish style guide for zine.
○ Reading grade level, image captions, language use, etc. impact zine
accessibility. See Appendix B’s “Style Guide” section to see this project’s
style guide.
● Conduct dialogue-based workshops with student cohort.
● Conduct design-based workshops.
● Conduct interviews for zine.
● Solicit articles for zine.
● Produce zine articles.
● Publish zine.
○ Publish in web and print as needed to hold a zine launch event and reach
target audiences.
● Conduct journal club workshops.

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 ○ These workshops combine three portions: reading and discussing a curated
selection of zine articles, including a mix of interview and design-based
outputs; a discussion of the ritual view of communication; and a
brainstorming session on the future of public health community
engagement informed by the zine articles. This project used the same 3
articles across workshops.
● Curate/adapt educational materials for zine.
○ These materials should follow the same style guide as the rest of the zine
articles. Adaptation of existing educational materials may be necessary.
● Hold zine launch event.
○ Research partnership needs and zine contributor input should shape this
event.
● Disseminate zine.
● Conduct developmental evaluation throughout.
○ This program’s adaptable nature requires a lot of on-the-ground decision
making about how to reach desired outcomes, As such, a developmental
evaluation framework is best suited for continual process improvement.

Outputs

● # Student workshop participants reached.

● Workshop curricula created or adapted to local context.
● # Articles in zine.
● # Journal club workshop participants reached.
● # Target audience members reached with zine.
● # Target audience members reached with launch event.

Outcomes

● Student confidence in discussing and questioning the health topic of focus.

● Academic researcher understanding of community questions and health
concerns; incorporation of factors into ongoing work.

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 ● Community-based organization concerns incorporated into partnership work.
● Context-specific advocacy outcomes.

Assumptions

This program rests on the assumption that a functional partnership exists and members
are already interested in advancing health equity. It also relies on partnership members reaching
agreement on a topic of interest and target audiences for the zine.

Network Map.
A logic model is useful for tracking a program’s linear progression from inputs to outputs
to impact. However, such a linear view of impact may ignore important networked effects,
especially when the definition of a program is still developing. As such, a network map can serve
as a tool for conceptualizing a nonlinear, networked thinking of events and impacts in the context
of a developmental evaluation ​(Patton, 2011, p. 119)​. Thus this project’s outcomes include a
network map meant to serve alongside a logic model as a heuristic tool for further program
development.
This project’s network map highlights how university professionals and members of a
medically underserved community interact through a research partnership. In the formal structure
of a research partnership, they will likely fill the roles of community-based organization (CBO)
partners, academic partners, and students/trainees. This program network map responds to that
structure while also acknowledging that some university researchers may themselves be
members of the medically underserved community in question. In this way, program
stakeholders can track program impact by observing changes in the nature of interactions and
relationships between major stakeholder groups.

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 Figure 25:​ Network map for the “People’s Guide” community engagement program.

This network map acknowledges that program stakeholders may wish to leverage their
work to change their interactions with external stakeholders. For example, students may wish to
use their involvement in such an academic-community partnership to expand their professional
network of university researchers. CBO partners may wish to use a “People’s Guide” publication
and launch event to draw the attention of policymakers to specific health issues. Patients may
wish to advocate for more culturally competent care for their communities. While tracking
program progress, it will be helpful for program participants, planners, and evaluators to flesh
out more detailed descriptions of stakeholder priorities in their own program context. This will
help point to useful methods of evaluating the networked impacts of the “People’s Guide”
program, such as social network analysis or tracking policy changes.
With a more open-ended approach to defining and evaluating desired relationships
between stakeholders, this network map can help capture more unintended program impacts
than a typical logic model. As these relationships will be highly context-specific, a participatory
network mapping method such as the Participatory Network Mapping Tool ​(Wijenberg et al.,
2019)​ will be most appropriate to build on the network map above. As the program will have
network impacts over time, it is best to conduct network mapping periodically over the course of
the program, from planning for the zine to disseminating the published version.

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III. B4: Discussion.
This community engagement program, even in its developmental stage, illustrates the
possibility of reconfiguring public health communication through a ritual view of
communication. Instead of focusing on top-down transfers of knowledge, public health
communication can focus on creating a community of learning. The “People’s Guide” suggests
what this might look like, with reconfigurations of typical power structures in
academic-community partnerships creating new social roles for participants.
This project also shows the affordances of developmental evaluation to advance
innovation in public health. As the methods are still developing for the kinds of reconfigurations
this project proposes, it is important to draw on the work of other fields to figure out how to
evaluate in-progress programs to share timely insights and create communities of practice.

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 CHAPTER IV. CONCLUSION.
To summarize this thesis in one sentence: public health communication is about
relationships and social structures, not just information. To round it out with a few more
sentences… I find it useful to describe the relationships and social structures of communication
as a ritual. Who gets to take part, and in what roles? With what power dynamics? Failure to
recognize these ritual aspects of communication can contribute to health disparities by ignoring
the social factors that fuel them. Targeting the ritual aspects of communication through public
health research and practice can create space for new kinds of research questions and metrics of
success that relate to the needs of medically underserved communities.
To summarize my motivations for writing this thesis: I believe a focus on equity is the
future of health and medicine in the US. With shifting demographics, a global environmental
crisis, and the long-term impact of a devastating pandemic on our hands, it has to be. Whether
the US will ever achieve health equity, I can’t say. But I know for sure that it’s possible.
Throughout this thesis, I combine theoretical arguments with personal accounts, methods
incorporating art/design, and historical cases to support my claims about communication and
equity. In the introduction, I describe how my own experience navigating health disparities and
death motivate my personal approach to health communication through art and design. If
communication helps maintain social relationships, I’d prefer the approach of an artist inviting
discussion of their work rather than a lecturer on a soapbox.
In Chapter 1, I describe the focus of transmitting information in public health
communication, and I tease out its shortcomings. By ignoring power, politics, and feedback
loops, this information-focused view of communication leads to public health community
engagement that maintains unproductive relationships with medically underserved communities.
By putting power, politics, and feedback loops on the table in public health research and practice,
a ritual-focused view of communication can create opportunities to improve these relationships
so as to better serve these communities.
In chapter 2, I describe what this ritual view of communication might look like in
practice: participatory research. The ritual lens of communication offers a way to understand the
expanded scope of work that participatory frameworks bring into the realm of research. They

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don’t just help build research capacity in community partners or increase the impact of scientific
research, they also create new kinds of relationships between public health professionals and
various publics. These participatory frameworks can help people realize the array of roles open
to them. Scientists can be advocates. Local community members can be experts. Health
professionals can be trusted neighbors. I recognize that organizations like the National Institutes
of Health (NIH) still need to learn how to systematically evaluate research and community
engagement through this expanded lens. So, in the meantime, I offer the Health Equity Rituals
model of community engagement for individual partnerships to do so for themselves.
In Chapter 3, I describe the ongoing development of a community engagement program
that relies on co-creation as a means to act on a ritual lens of communication. It starts with a
simple question: what if community engagement flowed in the opposite direction of what I’m
used to seeing? In this program, scientists do not play the role of experts. Students, artists, and
community leaders share their expertise through a “People’s Guide,” incorporating personal
experiences, professional opinions, and art/design work. What happens when researchers interact
with this collection of knowledge as they would an academic journal? My experience with this
method so far suggests that it might be a useful way to reshape academic-community research
partnerships in public health so as to better meet medically underserved communities’ needs.
In this concluding chapter, I do 2 things. First, I summarize the main points of my thesis.
Then, I tell you what needs to happen.
When I started work on this thesis in 2018, precision medicine seemed to signal the
future of health research and health care in the US. Precision medicine promises more precise
disease treatment and prevention through ever-larger amounts of data: genetic, clinical,
behavioral, environmental, and so on. Through the ​All of Us​ research program, the NIH offers a
vision of the future in which data and technology help the US move past health disparities and
overcome the burden of life-threatening conditions like cancer through precision medicine. To be
sure, precision medicine does not represent every single health research project, and ​All of Us
does not fully represent precision medicine as an emerging field. While this image of precision
medicine is just one forward-looking vision, it is remarkable in its coordination of government
agencies, corporations, nonprofit organizations, healthcare systems, universities, technology

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development, and policy work at the national level. Whether or not it achieves all of its goals, ​All
of Us​ will impact research questions, methods, and community engagement practices for time to
come.
As such, it is important to point out that ​All of Us​ feels as much like a vision of the future
as it does a rehashing of the past. There is a history of marginalized groups volunteering their
bodies, biological samples, and data for health research, only to receive none of the health
benefits that were promised to be available to everyone. The NIH’s participatory framing of ​All
of Us​ also draws on a rich history of political movements that sought to change oppressed
people’s relationships to research, media, and technology. In doing so, precision medicine
becomes the next chapter in an ongoing story about power and equity in the US, including the
ways these struggles manifest in health disparities. The emergence of precision medicine
presents an opportunity to for this story to play out differently than it has in the past.
In 2020, these struggles are manifesting in health disparities at lightning speed. To be
sure, the entire US health system is feeling the strain of the ongoing COVID-19 pandemic. A
dreamy vision of the future now involves basic material goods that, up until recently, were easy
to overlook as medical technology: masks, gloves, and swabs. Technically, yes, the virus does
not discriminate. Anyone can get sick, but it’s already very clear that certain communities are in
much graver danger. So, which communities?

Figure 26:​ A poorly drawn simulation of a Chicago health data visualization. Let’s say this one depicts
breast cancer incidence.

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 Immigrants in meat-packing plants. African American communities. Latinx communities.
Elders and people with disabilities in long-term care facilities. Native tribes. People experiencing
homelessness. Notice how this doesn’t call to mind the international jetsetters, high profile
celebrities, and star-athletes who were the first faces of this outbreak in the US. Notice how those
first faces were people who managed to get access to diagnostic tests while healthy enough to tell
their own story. Now, I am not making light of anyone’s experience with this pandemic. When I
have concerns about my health, I too use the resources available to me to alleviate them. But
there are dangerous patterns in who has access to health resources. So, if the virus doesn’t
discriminate, then what does?

Figure 27: ​The rough outline of pretty much any data visualization of a health issue in Chicago. Let’s say
this one depicts COVID-19 incidence.

As the picture of the impacts of this pandemic became clear, it was not a surprise to see
where the deaths and the growing number of cases were concentrated in my hometown of
Chicago. In heat maps, the south and west sides of the city stood out like sore thumbs. There
were odd pockets here and there, but the pattern was clear. It was a new retelling of the same old
story.
And now is a good time to tell you about why I hate data visualizations of the geographic
spread of illnesses in the US. For the most part, they tell the same old story. The south and west
sides of Chicago are suffering. If you’re from the US, I’m sure you could substitute the names of
areas of your own home state or hometown that are usually depicted as dangerous, unfortunate

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places. And yet, somehow, the human side of this suffering, the human face of resilience, and the
human actions that led to the need for this resilience in the first place are hidden behind clean,
computerized lines and data-based colors. The sterile nature of these visualizations suggest a
schematic. While that does not reflect the human decisions that go into the making of its visuals
or interpreting them, it does accidentally offer insight into the root of the problem. Health
disparities are not some unpredictable outcomes of a series of well-functioning social systems.
This is what it looks like for these systems to operate as designed.

Figure 28: ____________. ​You know what this is by now. Fill in the blank title with any health issue that
is impacted by socioeconomic factors.

Heart disease and cancer are the leading causes of death in the US, accounting for nearly
half of the lives lost in 2017 ​(Heron 2019)​. You could make a map of deaths from these illnesses
by ZIP code in Chicago, and it’d look a lot like the doodle in Figure 28. These disparities have
always been related to the conditions in which someone eats, sleeps, works, and socializes. With
conditions like heart disease and cancer, these disparities play out over the course of years. With
COVID-19, however, these disparities have played out over the course of weeks. In the initial
outbreak, the keystone of community risk mitigation was clear: stay home. If you can’t stay
home, you can at least stay away from others and wear a facemask.
So, it’s no surprise that some communities faced less good fortune and more danger than
others. What are you supposed to do if you can’t afford to stay home from work or wait for a
stimulus check or a backlog of unemployment applications? What are you supposed to do if you

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have no home to stay in? How do you maintain physical distance from others if you rely on
public transportation? What if encountering a police officer while wearing a mask poses more
danger than the virus? An expert epidemiologist could tell you the general kinds of population
health outcomes to expect under certain conditions of mitigation and spread. While a vital part of
the public health response to this disease outbreak, such knowledge will not help answer the
above questions. Quickly and assuredly, an epidemiologist could tell you why it’s probably not a
great idea for shoppers to gather indoors during an outbreak of a highly communicable
respiratory illness without at least basic personal protective equipment. Just as quickly and
assuredly, someone with the lived experience of over-policing could tell you why it’s probably
not a great idea for members of their community to wear a bandana as a substitute for a surgical
mask. In order to achieve health equity, it’s clear that health policy must incorporate such
varying kinds of expertise. But how?
Therein lies the tricky problem with advancing health equity. Solutions have to provide
immediate relief for community health issues and set the stage for long-term systemic change.
It’s not enough to train more people from underrepresented backgrounds to one day become the
experts who will shape policy. What about all the lives that will be lost in the meantime? It’s also
not enough to just give people disaster relief. What about preventing the next disaster? I like
using the ritual lens of communication to understand public health work because it reminds me
that people can fill many different kinds of social roles under the right conditions. A community
advocate can also be a researcher. An epidemiologist can also be an advocate. This adaptiveness
is required to ensure health equity in complex situations like pandemic prevention and response.
It will also be required to ensure health equity in the complex arena of precision medicine.
Through co-creative methods, different groups of people will be able to come together to
produce the kinds of relationships and social structures that will allow this adaptiveness to
flourish.
I close out this thesis with a call to action for more co-creative methods in public health
to address the many complex questions our society will face in the years to come. Pandemic
fallout, climate change, and the increasing prevalence of genetic technologies to name a few. I
have outlined the potential of a ritual lens of communication as a way to understand the kind of

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change that needs to happen in the face of these issues. To be sure, other lenses could also be
helpful: feminism, participatory research, social justice, and environmentalism just to name a
few. As I prepare to receive the training required to be a public health expert, I call on my peers
to use whatever combination works to help you advance health equity through community
engagement. The issues of disinformation, medical mistrust, and conspiracy theories on full
display during the COVID-19 pandemic illustrate what happens when people reshape
relationships to research institutions and medical experts for profit, political gain, or even just a
sense of control in a dire situation. Without health equity, whole communities will continue to
hold onto fear and mistrust. They will in turn be vulnerable to exploitation by those who know
how to use the ritual tools of communication to let others know where to find them and how to
join them. If public health professionals aren’t making their own calls for community action and
offering support around health equity, it should come as no surprise when vulnerable
communities turn elsewhere.

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 APPENDIX A: “A PEOPLE’S GUIDE TO PRECISION MEDICINE” ZINE ARTICLES.

The following articles are taken from the zine produced as part of the development of “A
People’s Guide” community engagement program. The articles exist online at
https://hercommunication.pubpub.org/issue-1​ at the time of publication of this thesis. Text and
images are pasted below. URLs to online resources and accessibility features like alt text are not
available in this printed format. The style guide for the zine aims to address these issues in print
by requiring article titles, sources, and image captions in plain text throughout.

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Cover Art: The 4 Spirits of Precision Medicine

by Samuel Mendez
Apr 01, 2020

Last year I didn’t know what this zine would be. But I knew I needed inspirational cover art. I
reached out to my friend​ ​@lolosketches​ to help. I talked with them about precision medicine’s
potential effects.

Precision medicine is an approach to medical research and care. Precision medicine's just
starting. But it has a lot of promise. It will use lots of data to personalize health care. It will use
lots of data to target disease prevention and screening. This includes genetic data. It also includes
health records and habits. It will likely lead to medical breakthroughs. But what else will it lead
to? These illustrations start the train of thought for the rest of this zine.

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 The Hard-to-Reach Spirit.

Illustration by​ ​@lolosketches

Not everyone trusts the medical system. The system

doesn’t serve everyone well. Not everyone trusts
research institutions. These institutions don’t serve
everyone well.

Precision medicine research requires lots of data. But

some communities might not take part. They’ll likely
have good reasons to say no. But in the end, research
data won’t represent everyone. This creates a
dilemma. Your community might need to take part in
research for precision medicine to serve you. But how likely will does that seem if the medical
system doesn't serve you well now? Solving this problem will take collaboration. Dialogue.
Community engagement. Co-learning.

I fear researchers might label communities "hard to reach" before labeling themselves "bad at
reaching out." The Hard-to-Reach Spirit is one side of the coin.

The See-Through Spirit.

Illustration by​ ​@lolosketches

Precision medicine promises knowledge. Big data that

researchers can use. Research findings that doctors can
use. Health information that you can use. Will you find
a statistic that can calm your fears? What will it mean to
have more statistics and projections on hand? What

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does it mean to see your body as a puzzle you can solve? The See-Through Spirit is an open
question.

The Average Spirit.

Illustration by​ ​@lolosketches

Precision medicine promises personalized health

care. Yet that will depend on comparisons to larger
populations. At some point, this will mean lumping
people together. In clinical settings. In public
health communication.

I trust researchers will do this work carefully. But I

still worry about how this will interact with
stereotypes. I worry about things like genetic
discrimination. About people misusing scientific
findings to try to defend their prejudice. I wonder
if implicit bias will inspire research questions in the first place. The Average Spirit is a prompt.
Who gets to lump people together?

The Storytelling Spirit.

Illustration by​ ​@lolosketches

Scientific findings aren’t much of a story on their own.

Who gets to decide if scientific discoveries are exciting?
Or if they're scary? Whose version of the story will get
the most attention? The Data Storytelling Spirit is a
reminder. Stories are powerful.

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Every Fucking Time: A story about genetic testing.

Aug 06, 2019

by Anonymous

Updated on:​ Oct 03, 2019

Intro.

I led this interview with someone who took a genetic health test that her workplace offered. She
has a family history of cancer. So, I was curious about what she wanted that she didn’t already
know.

Her results suggested that she might have a higher risk of getting colon cancer. I was also curious
about what it's like to get this kind of news. These results don't mean she ​will​ get colon cancer,
but it still seems scary. Then again, these results could also be a helpful tool. I wanted to learn
more about this mix of emotions.

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I included her story in this zine because her experience might be more common in the future. If
genetic health info becomes more common, others will likely face similar emotional journeys.
This story is a look into the future that precision medicine might help create.

-Samuel R. Mendez

Interview.

Why did you take the specific genetic test you did?

The only reason I did this particular test... [my employer] was offering it for free. In some way I
was probably putting too much faith in them. If they're making this available to people for free,
they must have done their due diligence that this is a reliable [genetic testing] company.

What happened when you received the test results?

You book an appointment [with someone to] walk you through the results. So when she was
walking through it, it was kind of a shock. It's kind of how I imagined a cancer diagnosis to be.

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 Pull Quote: “I imagine it’s for the better. And anything you can do to improve your life is
probably better, but not if it causes a lot of stress too.”

She said, okay, here is your mutation, specifically with this gene. Let’s say the average
population has a 10% chance of developing [colon cancer]. For those with this mutation, it's
maybe 80%. She was very clear, though, to say that these were groups of people. It was not
specifically me. That was very comforting of her just to say this doesn't mean it's going to
happen. She did say there was a specific department at [a local hospital] that focuses on cancers
based on mutations in genes. She gave me the name of a specialist doctor/researcher in
gastroenterology.

What kind of sucked is before I learned the test results, I had just changed my insurance
provider. So I couldn't see the recommended GI specialist till the following year. I decided to
wait till then to get a colonoscopy and deeper diagnosis. It was a bit of a relief to put it off, but
also caused some anxiety. Who knows what could develop in a year’s time untreated? A close
friend had recently passed away within months of discovering she had stage four cancer - and it
caused me to question how much getting more tests done immediately versus later mattered.

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With that feeling hanging over me, I decided even though I would wait to see the GI specialist, I
might as well still get my annual physical done to know what baseline “healthy” looks like for
me. His reaction to the gene testing was kind of skeptical. He was kind of like, “You know, those
tests, they're only so accurate, right? There's not a lot of sound research behind them… You
know, [our hospital] also has that kind of program,” and blah, blah, blah. He wasn't putting a lot
of faith behind it, I guess and I was a little biased [when I heard that]. He’s not working in a
specialty hospital, right? You go there for your annual physical and that's it.

After a year passed, I was eligible to switch insurance providers and could see the GI specialist.
It’s been a few months and I haven’t scheduled it yet... but I plan to.

How did you feel after receiving the test results?

For the first few months, I was a little paranoid… I went to a comedy show and [the performer]
was saying she loves to eat popcorn. And her father died of colon cancer. Her doctor told her to
stop eating so much popcorn because it messes with your colon, or something like that. And I
remember that moment just being like, “Fuck! That's kind of like me, right?” Those are things
that I should probably be looking out for.

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Illustration description: a woman looks at a giant box of fresh popcorn performing on stage in
front of a microphone. Credit: Annie wang.

I think my fear with some of the cancer stuff is that the people I know [who have had cancer], I
don't think it was something they were or weren't doing about their health. My aunt who died of
lung cancer was not a smoker. She lived in Hong Kong, so it was probably her environment. But
there are millions of people who live in Hong Kong without getting lung cancer. My mother with
a brain tumor... there was probably nothing that she was or wasn't doing to cause that. Both of
my grandfathers had prostate cancer. So is it bound to happen no matter what I do? How much
control can you really have over it?

Have your genetic test results made you think differently about the future?

I think had [my friend not gotten cancer], I wouldn't have felt such a need to take the test right
then. I think her situation pushed me to do it a little bit sooner, even [change] some of the ways
I'm living my life in general.

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Let's say I do get colon cancer and I have to step away from everything I know. Will I be most
disappointed that I didn't get promoted? Or disappointed that I won't be able to spend time with
family and friends? Or mad at myself for not taking better care of myself?

I’m in my late twenties now. And people are getting married and they're having kids and all that
stuff… If I have kids, am I passing on bad genes? If I don't have kids, it's kind of the end of my
family line. [But] I may be saving a child from having a lot of issues...

I feel like I'd be asking some of these questions regardless of the test though. I feel like it was
just like a quarter life crisis that came up. And I think it's more related to [the death of my friend]
than to the [genetic test results].

Overall, do you think your genetic test results had a positive or negative impact in your life?

The popcorn example… every time I eat popcorn, I question if it’s causing colon cancer. I still
eat it. But I question it every fucking time now. I used to have acid reflux. I blamed it on my
birth control more than anything. Now when things like that happen, it does scare me a little bit.
Like, my stomach's upset. Is this something?

It also kind of distracts me from other things. I don't think about skin cancer anymore. It's almost
like colon cancer's going to get me first. Heart disease is probably a more common killer than
colon cancer. Am I worried about the amount of meat I’m eating or my cholesterol or anything?
No. Am I worried about popcorn in my colon? Yes.

I imagine it's for the better. And anything you can do to improve your life is probably better, but
not if it causes a lot of stress too. So I don't know. I do kind of feel like I should take [another
test] though. I would probably pay for it. I don't think I would have paid [for my genetic test] had
[my employer not offered it for free].

Notes.

This interview is anonymous because it includes sensitive health information. The original
interview is much longer than this article. I transcribed it and edited it down to this current

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length. I also broke up long passages into the short sections you see above. Once I finished
editing, I sent it to the interviewee for her review, edits, and approval.

-Samuel R. Mendez

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#PMtldr: Precision Medicine; too long, didn't read. (Workshop Guide)

by Samuel R. Mendez
Jun 25, 2019

Updated on:​ Jul 25, 2019

Background.

This workshop guide helps introduce topics and questions around precision medicine and health
equity. I aimed to create a guide that would prompt participants to ask questions about the stories
of research they encounter. I aimed to prompt readers to imagine alternatives they might like to
see.

A Google Slide Deck for the Workshop is available.

The web version of this guide is below, with a​ ​Google Slide deck​ included. A PDF and a video
version of this guide will be available soon. If you use this guide, please share your story in the
Discussions section below!

1: You vs. an “Average Person.”

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 Three different-sized cats wearing a one-size-fits-all coat.

Let’s say a designer made a one-size-fits-all coat for an “average person.” It might fit a lot of
people ​okay.​ But it definitely wouldn’t fit everyone. And it likely wouldn’t fit many people ​well.​

Three different-sized cats wearing different sized coats: small, medium, and large.

Now let’s say the designer made a new coat for people in standardized categories. For example:
small, medium, and large. That’s better, isn’t it? But what about people who wear clothes outside
of these sizes? What about someone between a “medium'“ and a “large”? What about people

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with shorter arms than the “average person” of their size? These size categories are both useful
and flawed. It’s useful that people can quickly get an idea whether a coat will fit them. But as we
just saw, organizing people into broad categories will never work perfectly. So, what if every
store could tailor these coats so they fit the wearer?

A cat and a tailored coat.

Precision medicine is an approach to health care that asks a similar question. The​ ​US National
Institutes of Health (NIH)​ describes precision medicine in contrast to a one-size-fits-all
approach. They say that current medications are developed and tested for effectiveness in a broad
range of people.

With the​ ​Precision Medicine Initiative​, the NIH aims to fund research that asks how health care
workers can tailor health care to individuals. These questions aren’t new, but developments in
research and technology are fueling new kinds of answers.

Question Time.

1. Health care professionals already base their work on medical knowledge and patient info.
If they know a patient’s mom had breast cancer, they might follow research-based
guidelines that suggest more frequent mammograms. As another example, a patient might
talk about her troubles taking a birth control pill every day. In that case, a health care

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 worker might suggest an IUD instead. ​What are other ways that health care workers
base their work on what they know about a patient?

2. We know that health doesn’t begin or end in a doctor’s office. We can imagine the
“precision medicine” approach helping us in many aspects of our lives. For example, a
doctor could give you a nutritious recipe book that matches your budget and taste. Or a
nurse could point you to housing options that won’t upset your allergies. ​What are
other cases where personalized info could help someone lead a healthy lifestyle
overall?

2: You vs. a More Specific “Average Person.”

A tailor can re-stitch a coat so it fits you just right. But a health professional can’t work with
medical treatments that way. These treatments go through testing and approval for very specific
uses. So, instead of “tailoring” an existing medical treatment, a health care worker would help
you find the best option out of many. Or they might help you find the right combination.

One cat choosing from many seemingly similar coats. They all have the potential for the same
outcome.

One goal of precision medicine is to help you find your “just right” medical treatment. A health
care worker might use information about how a medicine usually interacts with genes, a work

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environment, everyday habits, and a medical history like yours. This means they would still
choose a “just right” treatment for you based on an idea of an “average person.” It’s just that this
“average person” would match you more closely in more ways.

This approach to medicine would require a lot of detailed information. It would require a lot of
your own personal data. And it would require a lot of data about the treatment itself.

Question Time.

1. Clearly, “precision coat-buying” wouldn’t work for everyone. Some people who want a
coat don’t want someone else to have all their measurements. Some people who need a
new coat can’t afford one. Some people live in hot climates where they don’t even need
coats. ​What are some situations where a precision medicine approach might not
work for someone?

3: You and Whoever’s in the Database.

Precision medicine requires answers to lots of questions. Who takes a certain medication? How
well does it work for them? Does it work better for some people than others? One goal of
precision medicine is to use the answers to these kinds of questions to personalize medical
treatment. So…

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 A cat compared to other cats in a database.

This means that precision medicine requires a lot of people to give researchers their personal
data. This also means that for precision medicine to work for ​you​ specifically, there need to be
people like you in research databases.

But what does “like you” mean? It could mean someone with similar health issues as you. It
could mean someone with similar genes. It could mean someone with a similar lifestyle. It could
even mean a combination of all of the above. This is why large numbers of diverse research
participants is key to precision medicine. This will help researchers and health care workers learn
more about how a treatment works under all sorts of real-world conditions. For example, the​ ​All
of Us​ ​Research Program​ aims to recruit 1 million people to be part of a precision medicine
research database.

Right now, there are a lot of unknowns when treating diseases. We know that some people will
respond well to certain medications. And we know that some people won’t. But we don’t always
know how to predict those outcomes. And as a patient, this can feel like random chance.
Precision medicine aims to use more information from research to make more accurate
predictions about medical treatment.

Question Time.

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 1. Do you think you would give your genetic information to a research study? Why
or why not?
2. Would you give a research study your medical records? How about survey
responses? Or data from an activity-tracking smartphone app? Is there a difference
between these different kinds of data for you?

4: Precision Medicine and Disease Prevention.

So far we’ve focused on precision medicine as an approach to medical treatment. However,

precision medicine impacts disease prevention too. Precision medicine might help predict what
kinds of people will get a disease in the first place. Again, what does “kinds of people” mean? It
might mean a particular combo of genes, environment, and lifestyle. It’s hard to say right now.

Genetics and environment came together to shape the cat we see today.

But these ideas about disease prediction aren’t new. We already use genetic and hereditary
information to predict disease and make health decisions. For example, you might know of
certain health conditions that run in your family. And tests for mutations in genes related to
cancer have been available for decades. However, there’s still a lot we can’t predict. It’s possible
we just don’t know all of the risk factors for certain diseases. Or, we don’t know about specific

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combinations of risk factors that lead to an actual disease. One of the promises of precision
medicine is to help provide more information to make better predictions.

You might be familiar with commercial genetic testing for health. Genetic testing companies can
tell you if you have a certain version of a gene that’s known to lead to a specific disease. These
companies can also tell you if you a have a version of a gene that lots of people with a certain
disease also have. Precision medicine aims to go beyond this, incorporating genetic information,
lifestyle info, medical history, etc. to better predict whether someone will get a certain disease.
The idea is that more info can lead to better predictions for more people.

Ideally, precision medicine can help all people be healthier by providing better predictions about
their health. They'll be able to talk with their health care providers about their risks. They’ll be
able to make informed decisions about their lifestyle and their medical care. However, things
probably won't be that simple for everyone.

Question Time.

1. We already know that diet and exercise are important to health. We already know that
sleep and social support are important to health. ​Do you think precision medicine can
offer useful information for you to form healthy habits? Why or why not?

5: Precision Medicine and Health Equity.

“Health equity” describes an ideal situation in which everyone has the chance to be healthy.
Right now, we don’t see health equity in our society. It's harder to be healthy if you can't afford
to see a doctor. It's harder to be healthy if you live in an area where fruits and vegetables are hard
to find. These kinds of social inequalities make it harder for some people to be healthy.

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 Three cats of different heights trying to see over a wall, standing on identical platforms. The
tallest is the only one that can actually make use of the platform given to it.

As it’s defined right now, precision medicine won’t make it easier to act on medical information.
Precision medicine may help provide people with more personalized health information. But it
won't change their income, their insurance status, or their neighborhood. Precision medicine
might help health care workers make better decisions about people's health care. But it won't
help people access medical care in the first place.

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A cat compared to other cats in a database. There aren’t that many similar to it, even though the
database is big.

It's not just things like income or medical care that shape precision medicine’s impact on health
equity. Research participation is important too. We mentioned earlier that precision medicine
techniques can work well for you if there is information from other people “like you” in research
databases. For that reason, diversity in research participation is pretty important. For example, if
participants in clinical trials all come from similar backgrounds, then it’s hard to say that the trial
results apply to broad range of people.

However, there are a lot of reasons someone might not want to be a research participant. Maybe
they want as few people as possible to have access to their personal information. Maybe they
have a very busy life and it’s hard to make time for a research study. Maybe the physical layout
of the city makes it hard for them to get around, and they can’t reach a research lab to participate.

This creates an unfortunate situation for medically under-served communities. They need more
representation in medical research. But they also face a lot of reasons to not participate. This is a
problem that precision medicine researchers will have to help solve if they want to see progress.

In this early stage, it’s important to think about the broad implications of precision medicine too.
What if we find out that people from specific backgrounds are more likely to get a certain kind of
illness? Could that lead to a new level of discrimination? What if pharmaceutical companies find

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ways to target medicines to populations that live in wealthier areas? Could that lead to a new
levels of inequality?

Precision medicine holds a lot of promise. But that doesn’t mean it’s guaranteed to advance
health equity. Like all things, it has both risks and challenges. Hopefully this workshop has
helped you feel more comfortable discussing precision medicine and asking questions about it.

Question Time.

1. Do you see any tension between development of medical technology and health
equity? Do you think it’s possible to advance both at the same time?
2. Do you usually hear about health equity when you hear about medical
research? Why do you think that is?

6. Learn More.

Thank you for taking the time to think about precision medicine! You’re now better equipped to
think about the messages you hear and ask questions as you hear about precision medicine in the
future.

If you want to keep learning more, here are some resources:

● “​What is the Difference between Precision Medicine and Personalized Medicine​?” from
the US National Library of Medicine.
● “​FACT SHEET: President Obama’s Precision Medicine Initiative​,” from the Obama
White House archive.
● “​Help Me Understand Genetics​,” by the US National Library of Medicine.
● “​Precision Medicine in Cancer Treatment​,” by the National Cancer Institute.
● “​What is Precision Medicine?​” from Learn.Genetics, by the University of Utah.

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Acknowledgements.

The Allied Media Project’s​ ​“A People’s Guide to AI”​ was a big inspiration for this piece.

I adapted OpenMoji emojis to make the graphics for this workshop guide. The emojis are
available under the Creative Commons Share Alike 4.0 (​CC BY-SA 4.0​).

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The Future of Anything: A conversation about history, survivorship, and justice.

by Oluwaseyi Adeleke and Samuel Mendez

Sep 24, 2019

Updated on:​ Nov 05, 2019

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 A decorative patch from the “Black Women Are the Future” line by PRGRSSN

Oluwaseyi Adeleke is a researcher and artist at the University of Illinois at Chicago. He is the
founder of Progression With The Krown (PRGRSSN for short), a clothing line that takes
inspiration from moments in black history. Past clothing lines include “Black Women are the
Future,” commemorating Marsha P. Johnson, a prominent queer rights activist, as well as present
day black transgender activists continuing the fight for for a liberatory future. More recently,
PRGRSSN dropped a line referencing the Afrocentric fashions of the 80’s and 90’s.

PRGRSSN also serves as a platform for community events, exhibitions, and parties to help
connect people with these important historical moments. PRGRSSN also uses a portion of its
profits to offer scholarships for high school and college students. You can learn about them at
PRGRSSN.com​ or on Instagram:​ ​@prgrssn_

Author’s Note:​ I interviewed Oluwaseyi to learn more about his views on the intersection of
community-based art and health research institutions. I really liked how he incorporated history

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into his discussions of the present and the future. And I thought other researchers would be able
to learn something from our discussion of the unique stressors that first-generation students face
as they move into the workforce in health fields. I edited this interview for length. I sent it to
Oluwaseyi for his review, edits, and approval.

A poster for the PRGRSSN event, “Building Blocks of Fashion,” an interactive fashion show and
exhibition exploring how fashion is influences by Black social movements in America.

What’s the Big Picture?

Sam:​ ​What's the big picture of what you’d like to accomplish at the intersection of clothing
design and health research?

Olu​: I would like to see a lot more institutions [like hospitals] put their money where their mouth
is. Say, we get a few people to tell their story [about cancer] on T-shirts and the hospital helps us
throw an event where they're able to showcase them in an exhibition and auction them off. And
the proceeds go back to those families. Because, yes, cancer research is super important, but
what does it mean if the people who need it most can’t access it because it's so expensive? I

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actually lost my uncle to cancer, and that’s his story. My family tried to pull money together and
he still ultimately ended up dying because he just didn't have the funds to actually get that care.

I shared this idea with a cancer survivor and she was explaining how it's an amazing idea to her,
but it scares her in the sense that she's not ready to do that unpacking. And she was saying that an
opportunity like this would make her more open to unpacking some of that stuff. And we had a
conversation about the support for a lot black and brown cancer survivors. What does that
actually look like? And are they given the platform to express themselves? And are they being
encouraged to unpack the trauma that might be associated? Overcoming [cancer] doesn’t mean
that it wasn't a traumatic experience. Or the fear of it coming back, the bills that might've come
out of it as well.

A model wearing pieces from the PRGRSSN line celebrating afrocentric fashions of the 80s and
90s.

How do you navigate being in 2 worlds at once?

Sam:​ ​A similar thing happened to my uncle who died of cancer while I was working at
Northwestern. And it was weird. I had no way to help him even though I was surrounded by all

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of the research and all the professionals and everything. How do you think about being in these
two worlds at once?

Olu:​ I know I'm probably not okay with existing in these two worlds. I know that it's necessary
because otherwise I might not have a platform. I won't have a seat at the table to even get some
of these ideas out there. I think that as far as you are navigating through this weird system and
being true to yourself and not sacrificing so much of your integrity, I think it'll be an internal
struggle that will at least allow you to go to sleep at night. You can't help everybody. But if there
is one thing that you can do, you don't necessarily have to hurt anybody along your journey
either. And I think that that's pretty much how I navigate those two worlds.

You hit the nail on the head, though. I remember when my mom came to me about my uncle. At
the time I was still premed, and she was just like, “What do you know? Who can we talk to?”
Especially being first-generation. A lot of your family's thinking because you exist in a certain
system that you have access to everything and running in that reality. But, I don't, right? I've
taken all these classes with these professors. I'm interning with doctors. But no one can really
help me. And even if they wanted to help me, care costs money.

How can researchers learn from the past when thinking about the future of medicine?

Sam:​ ​One last thing I’m interested in: precision medicine might really change our relationship
to health and disease. There might be new forms of discrimination based on genetics... There's a
lot of unanswered questions. I was interested in your view, given your focus on learning from the
past and amplifying certain voices right now.

Olu:​ The only way that we'll be able to make sure that the conversation about precision medicine
never becomes racist is if we make sure that we include people in the research and make sure
they have a voice to speak up. When you think about the Jim Crow laws, when they were
reversed, it came out of the United States finally hearing black people out. But as a result of the
people executing a lot of those changes, they weren't being pushed from a black lens. They were
still being pushed from a white lens.

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So, who are our cancer center directors? Who are the presidents for the National Cancer Institute
or American Cancer Society? Who are all of these people that we're choosing to put in power?
For example, I am not queer. So as a result, I will never ever be able to speak for queer people
and tell queer people what they need. I'm not a woman. I can never speak for women. There are
certain things that require certain people in power. And I think that's the most important thing
that a lot of people can do. When it comes to precision medicine, or just the future of anything,
it's about making sure that people with power are actually of that community that we're trying to
serve.

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Balloons, Bears, Candles, & Sunglasses: Joyful futures of precision medicine.

by ChicagoCHEC 2019 Research Fellows

Jul 08, 2019

Updated on:​ Feb 08, 2020

Introduction.

What might precision medicine look like if it spread joy? What if it built community? The
ChicagoCHEC Research Fellows​ proposed some answers to those questions.

Who?

The 2019 ChicagoCHEC Research Fellows are a group of undergraduate and post-baccalaureate
students. They bring diverse perspectives and experiences to help advance health equity. They

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come from City Colleges of Chicago, Northeastern Illinois University, Northwestern University,
and University of Illinois at Chicago.

What?

The Fellows completed a speculative design workshop. Samuel R. Mendez facilitated it,
adapting the format of “​THE ORACLE FOR TRANSFEMINIST TECHNOLOGIES​” to on
community health. In small groups, they responded to the following design prompt:

In Chicago 100 years from now, this object builds community & spreads joy. It uses the
data-driven techniques of precision medicine. Its target audience includes the descendants of
someone in your group. They might be biological descendants, ideological descendants, etc.
There are many ways to be a family.

Each group was randomly assigned an Object, a Principle, and a Value. They came up with an
Object design that centered their Principle and embodied their Value. They then presented their
designs to the rest of the groups. The workshop ended with guided feedback and suggestions on
sticky notes.

Where & When?

The Fellows did this workshop in Northwestern University’s medical campus on July 2, 2019.

Why?

These designs work as a conversation starter. They’re not meant to be practical product designs.
They’re not meant to be fleshed out business plans for medical technologies. They’re meant to
imagine what might precision medicine might lead to if there were different baseline
assumptions. Can medicine spread joy? Can medicine build community? Should joy be part of
discussions of medicine? What might medicine look like with a focus on communities instead of
individuals? Hopefully, these designs can prompt you to question your own assumptions about
medicine, community, values, and tech.

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Design 1: Floaters.

Brainstorm:

The Floaters group worked first with the cards: “Privacy” and “Balloon.”

“​Floaters” brainstorm log sheet.

They made the following notes in their brainstorm log sheet:

“Balloon floats around the world into communities that need medical care. The string acts
in a way to send and receive ‘signals’ (medicine, medical records, doctor appointments,
etc.) that individuals might share within the private sphere of the balloon. People can feel
safe in this balloon and that their information is secure. Can also be colorful and
attractive.”

They then drew the “co-creation” card and continued their brainstorm:

“Working to interact within the community, prior to the balloon actually arriving. Some
balloons will be platform for communities to meet other neighborhoods in order to
continue to build and co-create”

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Final Design:

“​Floaters” final design write-up.

Object Card:​ balloon. ​Principle Card​: privacy. ​Value Card:​ co-creation. ​Description:

● Large balloons float around over cities and communities, giving people access to health
care services, education, and food among other attractions.
● they can reach ​everyone​ regardless of their geographic location.
● Promotes health equity by bringing healthcare to those without access.
● Promotes community joy by allowing those in communities to connect in a safe &
exciting way.

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Sticky Note Feedback:

Floaters” final design commentary.

They received the following feedback and suggestions from other groups:

● What about bad weather?

○ It has a huge cloud over it to protect from surroundings
● Is it eco-friendly? What is powering it?
○ Wind and solar energy
○ The # of people whose lives were improves will help power it.
● How can it float?
○ O2 supply.
● How does it decide what communities to go into? How do people customize it?
○ It goes everywhere and bases care given on specific needs of each place.
● Where do the resources come from? Where does waste go?
○ They use the waste of the balloon to create art promoting health equity around the
world.
● Do people go inside it? Does it drop off resources?

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Design 2: Health Equity Bear.

Brainstorm:

The Health Equity Bear group first worked with the cards: “Teddy Bear” and “Find strength in
each other.”

“​Health Equity Bear” brainstorm log sheet.

They made the following notes in their brainstorm log sheet:

● Advances robot bear AI.

● Encouraging words programmed in.
● What hurts? Show on bear
● Learning bear
● Therapy bear
● More accessible
● Call persons through bear if you can’t see them
● mental health bear
● portable
● build community, plan social events for you
● support group capabilities

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 ● can teach you things you are interested in

They then drew the “accessibility” card and continued their brainstorm:

● Knows sign language

● can follow you
● affordable/free
● everyone gets a bear

Final Design:

“​Health Equity Bear” final design write-up.

Object Card:​ Teddy Bear. ​Principle Card​: Find strength in each other. ​Value Card:
Accessibility. ​Description:

● Design:​ Therapy bear. Machine learning. knows sign language. Can get you in touch
with friend/other people who feel the way you do. Follows you around. Gives you
reminders. Makes calls for you. Plans social events. Encourages you. Can teach you
things. Name it yourself. Language setting.
● Audience:​ everyone.

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 ● Health Equity:​ Free, anyone can get one. It follows you (no need to carry). Knows sign
language. Personalized, knows you. Therapy in your home.
● Hinder Health Equity:​ Uncomfortable with bear following you. Trauma with teddy
bears. Software malfunction. LAck of knowledge about the bear. Susceptible to hack.

Sticky Note Feedback:

“​Health Equity Bear” final design commentary.

They received the following feedback and suggestions from other groups:

● bear domination?
● How is it powered? Is it able to be powered in lands without electric access?
● Who is paying for it if it’s free to the people? (especially with capitalism)
● If you are feeling some type of way, does this bear transmit this private information to
other bears?
○ yes
● So is this just a cuddly robot?
○ It is more about helping someone who may be down personally
● Can the bear speak other languages? Can it teach humans?
○ Presenter mentioned that bear can speak different languages?

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 ● It’s free, so it’s available to many people. (health equity)
● Privacy and security
○ Can you guarantee privacy when the owner does not want to share through the
link?
○ Being AI-powered and having so many around that are mobile, can you guarantee
that the technology would not go rogue?

Design 3: The Candle of Life.

Brainstorm:

The Candle of Life group worked first with the cards: “Love Oneself” and “Candle.” They made
the following notes in their brainstorm log sheet:

“​The Candle of Life” brainstorm log sheet.

● Birthday reminder & reminder for annual health check-up. (Builds community/self love)
& closes the death gap.
● Therapeutic (ex: aromatherapy), creating atmosphere. ☮

They then drew the “sustainability” card and continued their brainstorm:

● 1 candle given to you on the day of your b-day (personalized)

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 ● Family: Huge candle is lit up on top of your home. With “Happy Birthday” spelled out in
your family language. Reminders for [check-ups at the doctor].
● Community: One central location/area where everyone’s b-day will be displayed.

Final Design:

“​The Candle of Life” final design write-up.

Object Card: ​Candle. ​Principle Card​: Love Oneself. ​Value Card: ​Multilingualism.
Description:

● A candle is lit and given at birth. It stays lit throughout your life but flickers
when you are unhealthy. The candle blows out when you die.
● A huge candle on your house lights on your birthday.
● In the center of cities and plazas, show happy birthday in different languages.

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Sticky Note Feedback:

“​The Candle of Life” final design commentary.

They received the following feedback and suggestions from other groups:

● Can the candle on the house be smaller and in a window/doorstep?

○ It’s big so everyone knows it’s your birthday!
● We love this idea!
● Is it a scented candle?
○ The candle can change scents to match your mood. Its color can also change
according to mood.
● How does your feeling/physical info transfer to the candle?
○ You will be linked at birth.
● What if it’s a windy day?
○ It is electrical. Technology has advanced [so] that we do not need flames.

Design 4: At First Sight.

Brainstorm:

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The “At First Sight” group first worked with the cards: “sunglasses” and “Celebrate small
victories.” They made the following notes in their brainstorm log sheet:

“​At First Sight” brainstorm log sheet

● Sunglasses (similar to Google glasses) that can scan a patient & see what’s wrong in their
body (like MRIs, X-Rays, etc.)
● Each individual getting help is a small victory in the overall health of human population

They then drew the “sustainability” card and continued their brainstorm:

● Glasses are recyclable

● Overall health is sustainable

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Final Design:

“​At First Sight” final design write-up.

Object Card:​ Sunglasses. ​Principle Card​: Celebrate small victories. ​Value Card:
Sustainability. ​Description:

1. How does the design work? Takes MRI, CT, X-Ray, etc. scans & transfers the images
to a computer screen via bluetooth.
2. Who is the intended audience?​ Everyone going to a doctor.
3. How does it promote health equity?​ Easily transportable, so it can be taken to small
clinics and abroad.
4. How might it hinder health equity?​ Expensive tool & you’d still need access to a
physician.

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Sticky Note Feedback:

“​At First Sight” final design commentary.

They received the following feedback and suggestions from other groups:

● Will the doctors have funds to fix the glasses if they break?
● What about patients that don’t have access to a doctor?
● Can it be used by someone who is not a doctor?
● Great idea! Very original and futuristic!
● Will it be available at Federally Qualified Health Centers and Safety Net hospitals?
● Will this replace all other machines? (MRI, CT, etc.)
● Very futuristic! Reminds me of something from Spy Kids
● What about radiation?
● What is the power source?
● I believe it will help with health care costs.
● Innovative IDEA!
● How can this be made more accessible?
● Will medical prep still be needed?
○ Yes.

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● How will privacy be protected?
○ Super cyber security system

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#AICoffeehouse: "A Whole New World" & "Lush"

by ChicagoCHEC 2019 Research Fellows

Oct 21, 2019

Updated on:​ Mar 08, 2020

Introduction

Here are 2 stories from the 2019​ ​ChicagoCHEC Research Fellows​. These stories dig into
potential unintended consequences of Artificial Intelligence (AI) applications in health.

Who?

The 2019 ChicagoCHEC Research Fellows are a group of undergraduate and post-baccalaureate
students. They bring diverse perspectives and experiences to help advance health equity. They

171
come from City Colleges of Chicago, Northeastern Illinois University, Northwestern University,
and University of Illinois at Chicago.

What?

Small teams of fellows made these stories in a design fiction workshop. Samuel R. Mendez
facilitated it, following the​ ​#AICoffeehouse storytelling workshop guide​. Participants focused on
developing their world and their main character. Then they told an oral story about the role an AI
health tool might play in their life.

Where & When?

The Fellows did this workshop in Northwestern University’s medical campus on July 2, 2019.

Why?

The writing process helped workshop participants discuss potential impacts of emerging
technologies. The workshop focused on making a character first. This put a fictional face to
abstract discussions of technology, security, and health. In this publication, these stories are
meant to help readers do the same.

172
“A Whole New World.”

A clay figure of Nicole, in a drawing of her house.

So, our character's name is Nicole. She's black. She's about average height. She's fashionable.
She likes going outside of her comfort zone... she tries. She's pretty shy, but she does have
confidence in herself and the decisions that she makes. And she's very empathetic, she likes
empathizing with others. She really admires integrity in people. And something that really
annoys her is lying. She wants to have more courage. Although she is confident in the decisions
that she makes, she wants to be more confident, like in reaching out to new people and getting to
know others.

So she is from the suburbs. In this world, all the suburbs are just townhouses and they all look
the same. They all have the same features and stuff like that. You don't buy a house, you're just
given a house. So there's no homelessness or anything like that. In terms of the buildings that
surround her, it's pretty futuristic and they're made of glass. And everyone has their own car

173
regardless of income. And we can upgrade every two years and they're ergonomical and fuel
efficient.

Like I said before, everyone has housing. And everyone is given the same amount of money each
month so they can spend it on food and living expenses, like going out and having fun. People
work 30 hours per week and they're given a month of vacation time every year. People spend
most of their time with their families and friends. All kids go to school because it's free and it's
accessible. People get around via car, but there is public transportation for people who are not
able to drive a car, or for kids. People mostly interact face to face or via advanced technology,
like holograms... or Face Time, the old school.

So in terms of health equity, healthcare is free. You can just go to the doctor whenever you're
sick. Or if you're not physically able to go to the doctor, it's like a hologram sort of thing. So like
your doctor can be in your room and not really be in your room. So the only health problems that
are present are those caused by pollution, lack of exercise, addiction and genetic factors. And we
chose those because those are things that you really can't help. Like, although this world is like
essentially communist, you can't really tell people to not smoke or not drink or exercise. Or you
can't help the genes that someone is born with. That's just what you're born with, and it just
makes you more susceptible to getting a certain issue.

In terms of responsibility for health equity, that would be the doctors because they need to
inform their patients of any diseases that they might be at risk of. That'll be the individual,
because they need to educate themselves and read up on illnesses that they may be susceptible to
having. And the community, because I think community is a big role in like just spreading
information.

So a recurring emotional issue that Nicole has is that she's shy, as she is afraid of talking to the
people. And this affects her in a big way because it is difficult for her to reach out to her doctor
and her friends and her community about any health issues that she may be more prone to
having, or any health issues that she is currently experiencing.

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So there is a certain AI tool, it's not too much different from what we have today. It's a cell
phone, and everyone has one, regardless of whether you're an adult or a child. You're just given
it and you don't have to buy it or pay for it or anything like that. You can use it in your daily life.
You have to consciously use this tool because I think it's a breach of security if it's just working
and you're not aware that it's working. So like if you feel sick, then you would go to this tool or
you contact your doctor and they would tell you what further actions actually take. In terms of
how this AI tool helps Nicole, because she's shy, she wants to work on that. She has therapy
three times a week with her little AI tool.

Story 2: “Lush.”

[The story refers to details in a collage illustration. The illustration is missing from this
write-up.]

So we came up with this little perfect world, we call it. So here's our perfect world, just to keep it
short and sweet. So an idea we came up with, I've had in my mind for a couple of years:we
thought of little pods like cornerstores. So every pod that's on the corner, it's like a Target, a
Walmart, a Jewel Osco, kind of like a CVS thing. Each pod is different and you can go to these
pods just to get your groceries. You can get your electricity and water. You can go get your
medications and drugs.

And Panchito over there is actually the villain in our story because he is not accepted in our
world, or he's the one that stands out in the world because he is addicted to drugs. So in our
picture we have a man going to get his medicine from the pod. So you just scan your prescription
and then it automatically comes out instead of having to wait, you know, 30 minutes or a day
sometimes, to process your medication. And over here Panchito's standing outside because he's
gonna go rob the guy for his drugs because he's addicted.

In order to keep you protected, this little blue thing right here is our force field. So once he enters
the pod—each person in our perfect world has bio-markers. So there's a little bio-marker that
will show that he is addicted to drugs and he's in an unhealthy place.

175
So as soon as he walks into the force field, the force field is going to basically clean up his
system and give him a fresh start. So it's going to detox his body, and unfortunately he's battling
with his emotions. Once he detoxes, he's gonna remember the tastes of the drugs, and he doesn't
have a support system at home. So then he's going to go back to the drugs. So then the cycle kind
of repeats itself. So we had like a flying car here, our city, and then we found a picture of him
battling cigarettes, but in reality in our story it's drugs.

176
Chilling Effect: A view of public health from the Spanish Community Center

by Veronica Gloria
Oct 07, 2019

Editor’s Intro:​ The Joliet​ ​Spanish Community Center​ (SCC) is a community-based service
nonprofit in Joliet, Illinois. The article below is a written interview I did with the SCC director,
Veronica Gloria. I sent her the intro and the questions via e-mail. After she responded, I
reformatted the text and added photos from the SCC website. -by Samuel R. Mendez

177
 A map showing Joliet’s location in Illinois. It is about 30 miles west of Chicago, with a
population of about 150,000. The city’s population is about 16% African American and 28%
Hispanic/Latino.

178
A large poster on the side of Chicago Street First Midwest Bank, advertising the SCC’s services.

I'm hoping you can answer these questions in your capacity as the director of the SCC, based off
of what you've seen and your ties to your community members. I know you can't really speak on
behalf of a heterogeneous community. But you do have a lot of insight and knowledge that I want
other people to hear. I tried to move the questions away from framing you as an all-knowing
spokesperson and more towards someone with a personal and population-level view of a set of
issues. Let me know if I missed the mark.

Can you tell me about the Spanish Community Center and the community it serves?

Spanish Community Center is a bilingual nonprofit agency with a 50 year history that provides
wrap-around social and educational services to the Spanish-speaking community in the
southwest suburbs of Chicago. Our services include bilingual childcare, food pantry, adult

179
education classes, immigration legal services, housing counseling, resource and referral, among
others. We serve primarily low-income immigrants from Latin America.

What are some of the pressing health issues you see this community face today?

Although we see patients with a variety of health needs, the most pressing are mental health,
diabetes, cancer, and palliative care which are all hard to come by, especially for undocumented
and low-income folks.

Pictured: The SCC offers a weekly food pantry.

Do you think there are health disparities within this community? Do some groups face
more hurdles to living healthful and fulfilling lives?

180
Those who are undocumented have the largest disparities. Undocumented children are covered
by health insurance thanks to All Kids Insurance, but once they hit 18, they are in the same boat
as their parents: uninsured and with limited access to affordable, quality care. There are a few
nonprofit clinics in the area that can assist with more common health concerns like the common
cold or infections, but more complicated physical ailments or mental disorders require treatment
that is typically expensive, far away, and often outside of families' awareness. Regardless of
status many families struggle to find reliable transportation, translation, timely appointments,
extensive time with the doctor, and options to choose between. Our community members
regardless of status have often noted that they do not feel welcome, respected, or heard by the
medical community due to their race and/or language. Many in the community seek alternative
forms of medicine as a more trustworthy source of health services, such as curanderos,
sobanderos, religious institutions, and home remedies because they are within a cultural and
linguistic realm that is more familiar to them, although I wouldn't have the data to say how
widespread this is. Many folks also wait to see doctors until their health concerns have worsened
due to both cultural and economic factors, such as the taboo of speaking of mental health and
stress related illnesses, as well as affordability concerns.

Pull-quote: “…it is difficult to imagine how precision medicine will reach us or affect us.”

181
When ICE agents have raided our area or been prevalent in the news, many noncitizens will
forego medical care altogether because they worry that immigration officials could either deport
them or make them deportable for becoming a "public charge" on society. This is often referred
to as a "chilling effect." Folks who are eligible for medical insurance are dis-enrolling their entire
families from Medicaid and All Kids insurance for fear of their enrollment blocking their
pathway to citizenship in the future, even though many of these same folks would not be affected
by the new public charge laws that the federal government is proposing. That being said, there
are many families who would be affected, and thus the chilling effect is a widespread response to
more restrictive immigration policies. We even recently heard of a case where a local,
well-known bilingual doctor has had to sell his home and private practice when his clients dried
up due to fears of engaging with professional medical services.

What are some of the strengths and assets this community already has? How do you
think these assets could be part of improving community health?

Some of the assets are that there are strong networks of churches, nonprofits, and bilingual
professionals from the local community who are trusted in the community to share reliable
information. There are also more and more activists and advocates pushing for bilingual,
culturally competent care across different fields, including health. Social media is another
important tool. Latinos are among one of the most active demographics on Facebook, and we
have found relative success in reaching communities through bilingual Facebook posts and
videos. The community also has a strong communication network through word of mouth, which
is both a positive and a negative in that both rumors and truths can be spread quickly through
existing, real-world social networks.

What lessons do you think health/medical professionals could learn from this
community?

Many doctors are already aware that immigration status, income, language, and culture impact
patients' ability to access quality care, but I would encourage medical systems to ask themselves

182
how their work insures that these barriers are alleviated instead of reinforced. I would encourage
them to form relationships with the nonprofits, clinics, and other networks that are trusted in the
community. Those who are trusted should be at decision-making tables. Bilingual and bicultural
professionals should be actively trained and recruited.. Otherwise, their work will continue to
reinforce the disparities that exist and they will need to accept that their work will have cultural,
linguistic, and legal limitations that affect large sections of the public.

Could you imagine precision medicine playing a role in supporting this community's
health? Why or why not?

When even basic care is hard to come by or trust in our local community for those who face
barriers related to income, language, culture, and/or immigrant status, it is difficult to imagine
how precision medicine will reach us or affect us.

183
Introduction

Here are 3 stories from the 2019​ ​ChicagoCHEC Research Fellows​. These stories dig into
potential unintended consequences of Artificial Intelligence (AI) applications in health.

Who?

The 2019 ChicagoCHEC Research Fellows are a group of undergraduate and post-baccalaureate
students. They bring diverse perspectives and experiences to help advance health equity. They
come from City Colleges of Chicago, Northeastern Illinois University, Northwestern University,
and University of Illinois at Chicago.

What?

Small teams of fellows made these stories in a design fiction workshop. Samuel R. Mendez
facilitated it, following the​ ​#AICoffeehouse storytelling workshop guide​. Participants focused on
developing their world and their main character. Then they told an oral story about the role an AI
health tool might play in their character’s life.

Where & When?

The Fellows did this workshop in Northwestern University’s medical campus on July 2, 2019.

Why?

The writing process helped workshop participants discuss potential impacts of emerging
technologies. The workshop focused on making a character first. This put a fictional face to
abstract discussions of technology, security, and health. In this publication, these stories are
meant to help readers do the same.

184
 “Almost Human.”

So Cyrus Huerta lives 200 years in the future and

desolate wasteland that used to be the United States.
This dystopian reality, that's the one, his family
from him. Um, this has Macon, like this isn't the
story, but this has made him very bitter and
everybody thinks there's something wrong with him
because he hates people. He doesn't trust anybody.
And he, um, is kind of like an outcast in the society.

With all the emerging technology, the income gap

has become wider. And because he showed great
promise and interest in robotics at a young age, he
was able to advance his class past that of his family, which in this world is typically unheard of.
Usually when you're born into a class, you stay in that class in this dystopian world. When he got
older there was a fire in his neighborhood and when the emergency like services came in they
only came in and saved him, because he was given priority because his proficiency in robotics.
So they were able to save him and they gave him robotic prosthetics. And all of his family
perished because they were not saved, even though they could have been saved. He covers up his
prosthetics because he feels guilty that he was saved and his family wasn't.

He was extremely depressed for years, but one day when he was walking in his old
neighborhood, he came up with the idea for a robot to be able to help people because there was
no one there to help his family. He has a pet (robot) bird named Sanchez who was his only
friend. He doesn't like talking to people. So he talks to his pet bird robot. It's very kind. And it's
able to reproduce itself. One day he lets it out into the neighborhood, shortly before he passes
away himself. And what he doesn't know is this invention was actually able to help people and
generations to come. So that way these health inequities don't continue. And, um, what happened
to this family doesn't happen to other people.

185
“Afterworld.”

Okay. Our story is called “Afterworld” and our character is

named Humana. Our world is set in outer space.

Humana is a 24 year old female who weighs 135 pounds. She

lives in a society where all women are required to be 125
pounds or lower. Her ability to keep her job as a doctor—health
care is free and highly monitored in this world—is dependent
on her maintaining the weight requirement as a female. She
hasn't told anyone that she's overweight, but the annual
weigh-in is coming. She lives in the spaceship called
"Amerikkka" with three k's instead of a "c," after a nuclear
disaster made the earth uninhabitable.

The weight restrictions are used to keep the spaceship afloat—or that's what the powers-that-be
tell people.

She has an AI teddy bear that reminds her to work out and stuff. It is created from the
consciousness of the people in the before-world. The powers-that-be tap into the bears, but the
bears are finding ways to fight back. She ultimately overthrows the government by telling the
people that their weightless in space. Her bear has the consciousness of a past astrophysicist. She
connects the bear to the main control system of the spaceship, and from there he speaks, and he
revels the truth of the society.

If you've ever seen ​Astroboy​, that was the basis for our story.

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 APPENDIX B: “A PEOPLE’S GUIDE TO PRECISION MEDICINE,” SUBMISSION
GUIDE.

Types of Submissions.

Sharing HER

These submissions focus on sharing personal insight on a specific health topic. They
might be personal stories. They might re-frame common questions and concerns around a health
topic. They might explain a health topic in a new and interesting way. Whatever form they take,
these submissions promote a new kind of understanding of a complex topic. They do so while
acknowledging the specific points of view creating them. Suggested maximum length: 1500
words or 7 minutes.

Analyzing HER:

These submissions analyze a process, piece of media, or phenomenon. This might look
like a textual analysis of the portrayal of health in a popular book. It might look like a content
analysis of a series of public service announcements. Whatever form these submissions take,
they shed light on something happening in the real world. These submissions include the
following :

● Background research describing what kind of work has been done on similar topics
before.
● A description of the methods the submitter(s) used
● A description of the results of the analysis
● A discussion of the significance of the results
● A 100-word abstract or summary at the beginning.

Suggested maximum length (without the abstract): 2000 words or 10 minutes.

187
Observing HER:

These submissions share a community or professional insight related to health equity.

They might highlight a community-generated solution to a public health issue. Or they might
describe a current issue and an existing community asset that could help address it. Suggested
maximum length (without the abstract): 1200 words or 6 minutes.

Response:

These submissions respond to other people’s work. It might be a written response to a

research article, a news article, a research project, etc. It might be a photo essay showing an
untold side of a story in the media. It might be a critique of a public health program’s approach.
Whatever format they take, these submissions help people question “business as usual”.
Suggested maximum length: 1000 words or 5 minutes.

Imagining HER:

These submissions imagine the possibilities of health equity. They might speculate about
what the future could be. They might write an alternate history. They might be works of fiction.
They might propose policies. Whatever form they take, these submissions help people think
outside the box. No suggested maximum length.

Breaking HER boundaries:

Anything that doesn’t fit in the above categories.

Licensing Submissions.

All content on this website is available under a​ ​Creative Commons Attribution (CC-BY)
4.0 License​. This means readers are free to share and adapt the content however they want. They

188
must give credit for the original work, share the content under similar conditions, and note any
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We understand that not everyone wants to share their work under their terms. As
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We do not currently offer an alternative for written content.

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The ​HER Communication​ style guide focuses on accessibility. We want to make our
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Citations.
Submissions may draw on specific knowledge from other people’s work. In these cases,
authors must acknowledge the contributions of others’ ideas. Authors coming from an academic
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Citation Format.

Authors who are used to these kinds of citations may use APA format, with the following
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189
 HER Communication​ articles use an adaptation of​ ​APA format for in-text citations​ and
lists of references​. APA format requires author-year format within sentences for citations in
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Articles on ​HER Communication​ should be around an 8th grade reading level. Ideally,
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We recommend a few general guidelines:

● Avoid passive voice.

● Avoid complicated words and jargon.
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190
 Structure.

​ ust use heading levels to provide structure. Each

Submissions to ​HER Communication m
submission begins with a title, which automatically uses a level 1 Heading. Written articles use
level 2, 3, and 4 subheadings for structure as appropriate. All headings and subheadings end with
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Make sure that the text of a link describes the location that the link takes readers to. So,
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If possible, please put a list of links at the end of the submission. This way a reader could
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A picture is worth a thousand words. But you can’t control a reader’s context. Our style
guide makes sure folks don’t miss out on vital info if they can’t see an image. This style guide
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All images must have a caption.​ No exceptions.

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191
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Include short amounts of text in an image caption. Include a transcript for longer amounts
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includes content from YouTube, Facebook, Twitter, Instagram, and Vimeo. We ask that you take
at least one of the following steps to share such content:

● Upload multimedia content directly to the PubPub platform. (Only if you have the rights
to do so).
● Provide a link to external content.
● Provide a transcript or description of multimedia content.

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APPENDIX C: HER Model of Community Engagement (printable).

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Kaleidocycle Instructions.

Cut out the template along the outer edges.

Fold and make a sharp crease at every vertical dotted line as well as every diagonal solid line.

Gently use the existing creases to fold the “reacting phase” diamonds over on top of the solid
black triangle. Use glue or tape on every solid black triangle to attach the “reacting phase”
diamonds, creating a three-dimensional chain.

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Finally, use glue or tape on the solid black tabs to join the chain together in a ring.

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Zine Instructions

Print the zine template on the backside of an executive summary, press release, or other
single-page summary of a public health project. Alternatively, follow the below instructions for
folding and cutting the zine without printing, and label the pages by hand.

Hold the paper vertically, and fold the top edge down to meet the bottom. Keep the paper folded
in half and fold the left edge over to meet the right, as if closing a book. Keep the paper folded
into quarters and fold the top edge down to meet the bottom again. Unfold, refold, and sharpen
the creases as necessary. When you are done, your paper should be divided into eighths.

If you’re using the printed zine template, the next step might be easier if you face the template
away from you, as in the right half of the photo above. Now fold the paper in half by folding the
bottom edge up toward you to meet the top edge, so you can see half of the zine template. The
bottom edge should now be a fold, and the top should be a flap.

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Now use scissors to cut along the middle crease up to the corner where it meets the center crease,
as in the photo above. The zine template includes a dotted line indicating where you should cut.
Now unfold the paper and fold it left to right like a book again. If you hold the top and bottom
edges with your hands, you should be able to use the existing creases and cut to bring the pages
together into a booklet, as in the photo below.

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Now fold your booklet so the front cover is “Success Story” and the back cover is “Failure”.
Your zine is ready, with the pages in the following order: “Success Story” (front cover), “1:
What’s Important?”, ‘“2: Who’s Involved?”, “Pause: How’s this Discussion Going?”, “3: What’s
Changing?”, “4: What’s Next”, and “Failure” (back cover). Use the photos below for reference.

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 Appendix D: “A People’s Guide to Precision Medicine” Journal Club Workshop
Materials

The following are images of slides used in the journal club workshops described in
Chapter 3 of this thesis. Following the slides are the pages provided to participants for reflection,
note-taking, and feedback.

These workshops incorporated two interviews (“The Future of Anything” and “Chilling
Effect”) and one design-based story from the zine (“A Whole New World”). These articles are
available in Appendix A.

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Workshop Slides

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Workshop Feedback and Note Taking Forms

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 Workshop: A People’s Guide to 
Precision Medicine. 
   

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Before: ​Reflection 
Take a few minutes to answer the following questions briefly. Feel free to 
skip any questions you would rather skip, respond with “not sure,” etc. 

1. What is your job title (or current level of study), and what is your 
area of work? 

2. What role do you think communication plays in health equity? 

3. Do you think you can personally do anything to help advance health 

equity in precision medicine? Why or why not? 

4. What do you hope to gain from this workshop? 

   

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Activity 1:​ Readinges & Pass-the-Mic 
Discussion 
Take a few minutes to read your article and reflect on it below: 

● What format was your reading? What was it about? 

● Did you learn anything from your reading? If so, what? If not, why? 

Take notes on the group discussion here:   

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Activity 2:​ Lightning Talk 
Take notes on the lightning talk here: 

   

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Activity 3:​ Snowball Brainstorm 
Write down anything you think is important to document from the large 
group brainstorm:   

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Activity 4: ​Reflection and Next Steps 
Feel free to skip any questions you would rather skip, respond with “not 
sure,” etc. 

1. Do you have any new thoughts about what role you think 
communication plays in health equity? 

2. Do you have any new thoughts about what you can personally do 
anything to help advance health equity in precision medicine? Why 
or why not? 

3. Did you gain what you expected from this workshop? Why or why 
not? 

4. Any feedback on the workshop? 

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Contact Info 
Name: 

Affiliation: 

If you would like to receive updates on this project or participate in future 

workshops around health equity and communication, please provide your 
contact info below:   

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 Keep this page for your own reference 
This workshop is part of my (Samuel R. Mendez) Master’s thesis in 
Comparative Media Studies at MIT, scheduled for completion in May 
2020. 

In my thesis, I am considering how to bring in ideas about 

communication from media studies into public health. One portion of this 
work is a zine titled, “A People’s Guide to Precision Medicine.” I am also 
producing workshops and educational materials to complement the zine 
as an effort to improve community engagement practices on the 
academic side of research partnerships. 

As such, I am using your anonymous written responses to evaluate and 

refine the workshop and zine content. I will transcribe and anonymize the 
handwritten responses for digital storage, then destroy the original 
copies. If you gave me your contact info, I will store that info in a separate 
mailing list for people interested in the zine project. 

At the end of these workshops I will self-publish the collective 

brainstorm list as part of the zine, where I will invite zine contributors to 
comment on them. By default, I will credit participants of these 
workshops collectively. Once the list is online, I will send it to everyone on 
the zine mailing list for commentary, and for the chance to be named 
specifically in an “Acknowledgements” page. 

Please reach out to me with any questions or comments: 

Samuel R. Mendez 
[email protected] 

Zine: ​bit.ly/peoplesguidePM

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APPENDIX E: " ✨ Abstract ✨" SCREENSHOTS

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