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DG Diss DRAFT 3 UCSF UC San Francisco Electronic Theses and Dissertations Title Homo experimentus: digital selves and digital health in the age of innovation Permalink https://escholarship.org/uc/item/8h92q6rt Author Greenfield, Dana Emily Publication Date 2015 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California ! Copyright 2015 by Dana Emily Greenfield ! ii! ! To the memory of my mother Linda Brodsky, MD, who dedicated herself to continuous improvement and innovation, before it was fashionable. Acknowledgments I owe many thanks to the UCSF Department of Anthropology, History and Social Medicine (DAHSM) and the UC Berkeley Department of Anthropology. In particular, this work would not be possible without the guidance and insights of my committee: Vincanne Adams, Ian Whitmarsh, Cori Hayden and David Winickoff. As my dissertation chair, Vincanne provided hours of close reading and thoughtful dialogue to help shape the ideas and analysis that follow. Without her keen editorial vision, this work would be much less coherent. Ian Whitmarsh also provided so much expansive thought to this work and the years of graduate training that undergirds it. He always reminds us to “write at our edge,” where understanding begins to unfold. I thank Cori Hayden for her imagination and diagnostic acuity. From her, I have learned to find new openings and new ways to see the world ethnographically. Finally, David provides his incisive and discerning input, and serves as a model for living at the boundaries between theory and practice. Dawn Nafus provided critical readings of Chapter 2, and the opportunity to publish an earlier version of this material in a forthcoming edited volume. Thank you for your faith in me and for encouraging me to embrace my voice. Finally, graduate school would not have been possible without the financial support of the UCSF Medical Scientist Training Program, DAHSM, the Wenner-Gren Foundation Doctoral Dissertation Grant, and the UC Humanities Graduate Student Dissertation Fellowship. !iii! ! Homo experimentus: Digital selves and digital health in the age of innovation Dana Emily Greenfield ! Abstract ! This!dissertation!is!an!ethnographic!investigation!into!the!uses!and!meanings!of!emerging! quantified5self!and!digital!health!technologies,!which!enable!the!collection!of!personal!and! biometric!data.!As!self5quantification!tools!proliferate!–!from!step!counters!to!wearable! heart!monitoring!devices!to!wireless!scales!and!blood!pressure!cuffs!–!I!ask!what!are!the! implications!for!how!we!experience!and!understand!health,!illness,!and!the!experience!of! daily!life.!In!particular,!digital!health!devices!that!mobilize!tools!once!restricted!to!the! doctor’s!office!or!hospital!alter!the!location,!mode!and!dynamics!of!care.!How!is!medical! expertise!and!practice!remade!when!clinical!metrics!are!in!the!hands!of!patients!or!lay! people?!How!is!the!role!of!the!patient!altered!with!the!reflexive!use!of!the!clinical!gaze,! when!self5care!occurs!through!self5quantification?!! ! This!investigation!is!based!on!over!a!year!of!fieldwork!in!the!digital!health!industry,!the! movement!for!participatory!medicine,!and!the!Quantified!Self!movement.!The!latter!is!a! community!of!individuals!who!utilize!self5tracking!and!digital!health!technologies!to! measure,!understand,!improve,!and!care!for!themselves.!The!QS!movement!began!in!the! San!Francisco!Bay!area!with!small!meetings!of!individuals!sharing!their!data!and!has!now! grown!to!over!100!groups!around!the!world,!including!two!annual!international! !iv! ! conferences.!The!data!was!gathered!via!participant!observation!and!interviews!across! these!various!sites!where!new!health!technologies!are!being!developed!and!used.! ! Through!techniques!of!self5quantification,!self5reflection!and!self5care,!"trackers"!challenge! traditional!clinical!practice!and!cultivate!new!forms!of!knowledge!production,!medical!and! others.!The!very!terms!of!health!and!illness!are!in!flux,!I!argue,!as!the!ability!to!collect! almost!continuous!data!on!oneself!and!one’s!body!makes!daily!life!available!to!continuous! innovation!and!optimization.!!I!explore!the!meanings!of!living!in!experiment,!where! digitized!life!provides!almost!limitless!experimental!horizons!for!the!cultivation!of!new! (and!often!improved)!selves.!Homo$experimentus!is!the!name!of!an!emergent!subject!and! set!of!practices!that!come!out!of!life!and!health!rendered!digitally.! ! ! v! ! Table of Contents: 1. Introduction: Health is Data .................................................................................................1 2. Deep Data: Notes on the n of 1 ..........................................................................................50 3. The Well Role ....................................................................................................................85 4. Participatory Medicine .....................................................................................................140 5. Homo experimentus .........................................................................................................179 6. Epilogue: Living 2.0 ........................................................................................................225 7. References ........................................................................................................................230 !vi! ! Chapter 1. Introduction I. Health is Data On April 1, 2015 a tiny storm brewed in a corner of Twitter when Mark Cuban—business mogul, owner of the Dallas Mavericks, entrepreneur and author of How to Win at the Sport of Business: If I can do it, you can do it—posted to his 2.83 million followers: “if you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health.” A follow up tweet read: “create your own personal health profile and history. It will help you and create a base of knowledge for your children, their children, etc.” These seemingly innocuous suggestions from a celebrity businessman (in addition to his high profile holdings, he is also one of the investors on Shark Tank, a show where small-time entrepreneurs pitch their ideas to investors and negotiate business deals—where the American dream meets reality television) caused a little bit of turbulence in the twitter-sphere. Physicians and medical journalists, most notably Pro Publica writer Charles Ornstein, jumped to challenge Mr. Cuban on the necessity and scientific validity of such frequent testing, arguing that prevention can actually be a form of over-treatment. Debate erupted between those who worried that Cuban’s vast reach (millions of followers) would mislead and confuse “the public” and those, like Mr. Cuban, who would prefer to take health matters into their own hands. Some painted the reactions of physicians and journalists as paternalistic towards both patients and physicians. Some health data startups joined the virtual brawl too, taking advantage of the exposure and Cuban’s maverick position. Inside Tracker, “a personalized health analytics company,” which offers a “science-driven nutrition and lifestyle interventions that empower people to optimize their markers,” chimed in, offering its services to help people make sense of this data: “Quest ! 1! ! [Diagnostics] is a good place to start, but that will still rely on ‘normal’ ranges. We’d love to help!” It did not take long for news pieces to spin out of the social media maelstrom. In the LA times, journalist Michael Hiltzik wrote1: In one tweet, Cuban writes: "a big failing of medicine = we wait till we are sick to have our blood tested and compare the results to 'comparable demographics.'" No, that's not a "failing" - that's the right approach. As an element of public health policy, having our blood tested for nothing in particular or everything under the sun would be unimaginably wasteful and costly and invite billions of dollars in unnecessary treatment. You want to know why Americans spend so much more of its gross domestic product on healthcare than most other developed nations? It's because we already have too many tests and too aggressive a response to the results they deliver. In short, the Mark Cuban method is one that would make sense only to a billionaire, and a billionaire with no understanding of health and healthcare. As a public intellectual, moreover, Cuban isn't especially open to professional advice or hard information. His attitude is that he didn't get where he is today by !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 1 Accessed here: http://www.latimes.com/business/hiltzik/la-fi-mh-mark-cuban-vs-the-facts- 20150403-column.html ! 2! ! listening to criticism. But then again, he's a businessman and billionaire entrepreneur, not a doctor. One reason that physicians active on social media and health journalists pounced on Cuban’s tweets was the worry that his reach might drive people to follow his advice, demanding more testing from their doctors. These are worries that stem from past social media effects of celebrities sparking, for example, the spread of anti-vaccination sentiment. Cuban’s critics urged him to educate himself on the clinical and health policy evidence that point to the dangers of over-testing and potential over-treatment. In spite of expert opinion, Cuban dug his heals in and challenged the journalists to trust doctors to be able to handle the data. He asserted that the data was not for “diagnosis” or even “treatment” but to make sure he had a baseline
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