Self-Tracking Health Data and the Possibilities for Patient-led Innovation


Today smartphones and wearable devices help people to self-track: hours slept, steps taken, calories consumed, medications administered. Technology producers shipped over one hundred million wearable sensors in 2016. However, scholars do not yet understand how — or if — digital self-tracking works to promote positive behaviour change for health, much less the social and political ramifications of self-tracking for reshaping norms, protocols, and policies for health and wellness. This talk reports results from a comparative study of the practices around self-tracking data among fitness advocates, elderly chronically ill patients in a telehealth programme, and primary care physicians. I use the findings from this research to motivate five key propositions for using self-tracking data to launch innovation in healthcare. I do so by bringing the tools of sociological theory and methods to understanding how people recorded, analyse, and reflect on data about themselves; by drawing lessons from the early adopters of ‘Quantified Self’ tools, practices, and communities; and by mapping the discourses about data among multiple stakeholder communities in healthcare. Can such data be used in a way that empowers and educates the people whose bodies generate it? Can self-tracking data be used to support patient involvement in the innovation of healthcare? What critical infrastructure needs to be put in place so that self-tracking of health does not cause harm to patients? The answers, I will argue from looking at cases of conflict over self-tracking data, will depend largely on technologies and policies for self-tracking health data that are being designed now.


Professor Gina Neff is a Senior Research Fellow at the Oxford Internet Institute and an Associate Professor in the Department of Sociology at the University of Oxford. She studies innovation, the digital transformation of industries, and how new technologies impact work.

She has published three books and over three dozen research articles on innovation and the impact of digital transformation. Her book Venture Labor: Work and the Burden of Risk in Innovative Industries (MIT Press, 2012) about the rise of internet industries in New York City, won the 2013 American Sociological Association Communication and Information Technologies Best Book Award. Her book, Self-Tracking, co-authored with Dawn Nafus (MIT Press, 2016) focuses on the practices and politics of using consumer technologies to track health and other everyday personal metrics. Her ongoing project on large-scale building architecture and construction examines how new information and communication technologies require new ways of working and the challenges of implementing these changes at an industrial scale.

She holds a Ph.D. in sociology from Columbia University where she remains a faculty affiliate of the Center on Organizational Innovation. Professor Neff has held faculty appointments at the University of Washington and the University of California, San Diego. She has had fellowships at the Institute for Advanced Study and the Center for Information Technology Policy. Her popular writing has appeared in Wired, The Atlantic, and Slate.

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