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

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“Health Equity Rituals: a Case for the Ritual View of Communication in an Era of Precision Medicine” “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 1 “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 2 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) 3 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) 4 ● 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) ​ 5 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) 6 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.
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