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Sustainable Data Ecosystems for Digital Health: Empowerment and Values in Nordic Platforms

Thu, September 5, 9:45 to 11:15am, Sheraton New Orleans Hotel, Floor: Eight, Zulu


Personal data has become an object of vast investment in digital health. Across the Nordic welfare states, online platforms are currently taking form with a shared promise of individual ‘empowerment’ to exercise control and choice over the handling of their own data. Since 2012, start-ups such as Digi.Me, Data for Good and HealthD360 have attempted to put forward different models through which individuals can securely import and share data - from their wearables, medical records and other informational sources - through donation or trade. In legal terms this is known as the “right” to data portability, entitling individuals to acquire or move their personal data from one service provider to another in a machine-readable format when technically feasible. The ambition is to build a sustainable ecosystem where data can traverse established (organisational, sectoral and national) siloes to harness big data and other novel technology for the advancement of prevention and personalisation in healthcare.

Drawing on ethnographic research conducted between 2017 and 2019 at start-ups, innovation networks and political settings, the aim of this paper is to describe the rhetorical function of ‘empowerment’ in the promotion of online platforms for health-related data, and explore how ‘empowerment’ is manifested in ideas of what data is for the platforms involved. The paper argues that STS should attend to values that become embedded in the technological platforms as they are built, and that at present, the assumptions underlying ongoing platformisation are insufficiently scrutinised.