Abstract
Based on the author’s experiences the practice of self-tracking can empower individuals to explore and address issues in their lives. This work is inspired by examples of people who have reclaimed their wellness through an iterative process of noticing patterns of ups and downs, trying out new ideas and strategies, and observing the results. In some cases, individuals have realized that certain foods, environmental exposures, or practices have unexpected effects for them, and that adopting custom strategies can greatly improve quality of life, overcoming chronic problems. Importantly, adopting the role of investigator of their own situation appears to be transformative: people who embarked on this path changed their relationship to their health situation even before making discoveries that helped lead to symptom improvement. The author co-founded the BodyTrack project in 2010 with the goal of empowering a broader set of people to embrace this investigator role in their own lives and better address their health and wellness concerns, particularly those with complex environmental or behavioral components. The core of the BodyTrack system is an open source web service called Fluxtream (https://fluxtream.org) that allows users to aggregate, visualize, and reflect on data from myriad sources on a common timeline. The project is also working to develop and spread peer coaching practices to help transfer the culture and skills of self-tracking while mentoring individuals in how to self-assess their own situation and guide the process for themselves.
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Notes
Examples include Norman Childers, Arthritis-Childers' Diet That Stops It!: The Nightshades, Ill Health, Aging, and Shorter Life (self-published), and Michael Fowler, Nightshade Free Pain Free (Grass Fire Media, 2007).
Human System Debugging breakout session, Coca-Cola Scholars Leadership Summit, Omni Hotel at CNN Center, Atlanta, GA, October 3, 2008. Slides at http://bit.ly/hsd-slides-2008.
Such an effort, if approached as a scientific or academic endeavor, would have had a different sort of purpose and used different techniques and evaluation criteria that I explicitly do not attempt to subscribe to in this work.
Later on I did encounter efforts that are engaged in increasing the visibility of such messages. These include the Quantified Self movement (http://quantifiedself.com/), the Society for Participatory Medicine (http://participatorymedicine.org/), the Medicine X conference (http://medicinex.stanford.edu/), and efforts to produce a movie on the topic of Medical Refugees (http://www.undiagnosedfilm.com/).
Health Empowerment through Self-Tracking, Anne Wright, Strata Conference, New York Hilton, New York, New York, September 23, 2011 (http://bit.ly/aw-strata-2011).
The weight measurement of these devices tends to be good, but the inferred body fat mass readings are very sensitive to confounders such as hydration. The ongoing challenge is communicating such nuances in a culture that tends, in my opinion, to take labels too literally. The culture of self-tracking can play a valuable role in helping people to develop a more sophisticated understanding of the distinctions between the name of a metric and the reality of its behavior and to share such understandings with others.
Other vendors have followed suit since, though not as many nor as fast as we would wish. Convincing device and app companies to do the right thing with respect to user-directed data access remains an ongoing mission.
First Quantified Self Conference, Computer Museum, Mountain View, CA, May 28–29, 2011 (http://quantifiedself.com/conference/Mountain-View-2011/). Our poster and slides are available at http://bit.ly/aw-qs-110528.
See Dr. Paul’s medical practice web site at http://mydoctorsf.com/ or his blog at http://quantdoctor.com/ for more information.
The lack of a non-domain-specific term in the English language to be used here, and the fact that existing terms like “patient” or “client” imply a different power relationship than we seek to promote within the quant coach/self-tracker relationship, is a persistent problem in trying to communicate these points.
Video: https://vimeo.com/channels/londonqs/102604323 from 9:38 to 17:32. Slides: http://bit.ly/aw-qslondon-140619.
If, instead, it turns out they remember that such an event happened but find that they didn’t actually make an observation, that’s useful too. The disappointment they they’re missing data that they would have wanted to have acts as feedback for reinforcing the habit of recording such events in the future. It also provides an opportunity to brainstorm and seek out what other data traces might be available to reconstruct when the missing event happened, which is a valuable skill.
Third Quantified Self Conference, Stanford University, Palo Alto, CA, September 15–16, 2012 (http://quantifiedself.com/conference/Palo-Alto-2012/).
“Quant-Friendly Doctors and Doctor-Friendly Quants” breakout session, Quantified Self 213 Global Conference, Presidio Golden Gate Club (Chapel Hill room), San Francisco, CA, October 10, 2013, 10:30 am. For details see http://mydoctorsf.com/the-quant-friendly-doctor-at-the-quantified-self-conference-2013.html.
See Dan Ariely’s book The Upside of Irrationality or Charles Eisenstein’s Sacred Economics (http://sacred-economics.com/).
Reference
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Acknowledgments
The Heinz Endowments of Pittsburgh provided the majority of the funding for this work. I am eternally grateful for their steadfast support. I would like to thank Illah Nourbakhsh and the CMU CREATE Lab for providing the environment that allowed all this happen. Thanks to all of the people who worked with me on creating the technology for BodyTrack over the years, including Candide Kemmler, Justin Loutsenhizer, Adam Mihalcin, Eric Park, Chris Bartley, Josh Schapiro, Rich Henderson, Ray Yun, John Fass, Nolan Hergert, Abhinav Gautam, Julien Dupuis, and Yury Chernushenko. Thanks to all the people who have collaborated with me on putting together the cultural pieces, including Dr. Paul Abramson, Thomas Christiansen, Mette Dyhrberg, Augustus and Renna Brown, Ernesto Ramirez, Adriana Lukas, Mariachiara Tallacchini, and Dawn Nafus. Thanks to all the wonderful quant coaching participants and others who have allowed me to share in and learn from their personal health journeys. Finally, and most emphatically, I would like to thank my husband, Randy Sargent, who played all of these roles and more, and stuck with me through it all.
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This article does not contain any studies with human participants or animals performed by any of the authors. The activities described were conducted as participatory design collaborations, not studies. Unlike a study, the individuals involved were pursuing their own goals according to their own chosen methods, protocols, and evaluation criteria. The purpose of the exercise was to collaboratively learn how to better support people in developing their own agency and skills for such pursuits.
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Wright, A. Self-Tracking: Reflections from the BodyTrack Project. Sci Eng Ethics 24, 999–1021 (2018). https://doi.org/10.1007/s11948-016-9801-2
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DOI: https://doi.org/10.1007/s11948-016-9801-2