I had the unique chance yesterday to hear a talk of Minna Ruckenstein (University of Helsinki) about datafication of health. I think this is one of the most important topics of the last decade – being one of the largely underestimated, largely ignored development, but nevertheless relevant for the future of medicine. It basically means conversion of health into data (like Facebook is converting communication into data) which happens on multiple scales and at multiple levels. Her excellent paper at Annual Review of Anthropology was just posted a month ago and can be downloaded at the journal website (or at SciHub).
Recognizing that the datafication of the traditional health ecosystem is generating new power asymmetries and disrupting traditional regulatory and ethical mechanisms, some scholars have embarked on applied research projects, often collaborating outside their academic spheres. These citizen-centered initiatives appeal to patient organizations, savvy self-trackers, and ordinary people to address issues such as the tension between data openness and data ownership; asymmetries of data usage and distribution; the inadequacy of current informed consent and privacy protections; and the need to reappropriate and rearticulate concepts such as “sharing” and “the public good” that have been co-opted by technology companies seeking free access to their users’ data.