Across the field of health and wellness there is a lot of talk about data, from consumer self-tracking and Quantified Self data, to data-driven, personalized health care, to data-intensive, crowd sourced, scientific discovery. But what are these different stakeholders talking about when they talk about data and are they talking about the same thing?
At EPIC, in the “Big Data/Ethnography or Big Data Ethnography” session, I presented on this topic drawing from our ethnography of the impact of consumer big and small data on institutions of healthcare. In this post I use the recent controversy between the FDA and personal genetics testing company, 23andme, to exemplify many of the concepts my co-author, Dr. Gina Neff, and I develop in our EPIC paper “What we talk about when we talk data: Valences and the social performance of multiple metrics in digital health”, rather than simply re-present them. I also demonstrate how ethnography can be leveraged in the context of so-called “big data” or data intensive transformations in science and practice.