Collect, Curate, Care: Sociotechnical Health Data Infrastructures and the Creation of Data Citizens

• In Event: Speculation and Innovation in Digital Health - II

Abstract

In recent years, big data has become an important matter of concern. In particular big health data has been heralded as the harbinger of progress in medical research, treatment and prevention, promising great collective and individual benefits. The realization of these promises is connected to the establishment of digital health infrastructures that should enable the systematic collection, processing, circulation and analysis of health data.
In our paper, we will present early empirical work as STS researchers in Smart4Health (Grant number: 826117), a large-scale Horizon2020 project developing an interoperable data platform prototype for citizens to store, access and share (e.g. by donating data to research) their health records. These records will contain data collected by more traditional healthcare actors as well as invite citizens to collect and integrate self-produced data (e.g. through apps, tracking devices, wearables).
This process of creating a new sociotechnical data infrastructure, however, also brings to life specific visions and versions of data citizens; data citizens, willing and capable to exercise the right to "their data" as expressed in the new European data protection regulation, to nurture and care for their data bodies/doubles, to manage both data and bodies as well as to develop ways of knowing and self-governing their bodies through data. Embracing such a vision of the citizen then means asking a set of questions concerning the imaginations of citizenship embedded in and expressed through this technological data infrastructure, new forms of inequalities that potentially emerge and novel geographies of responsibility that structure the health domain.

Authors

• Susanne Oechsner, University of Vienna

• Ulrike Felt, University of Vienna, Department of Science and Technology Studies