Exploring digital sovereignty: open questions for design in digital healthcare

Abstract

Driven by a culture of ‘data fundamentalism’, datafication is being increasingly introduced in health services, sometimes with little transparency and patient engagement. This paper will be drawing on research from the UK in order to critically reflect on the wider impact of health digitalization and issues of digital rights and data justice, which are sometimes overlooked in this field. The case from the UK deals with the effects of datafication in community health services—and more broadly welfare services—within the field of mental health. People with experience of mental-health service using digital health services are in fact made visible, represented and treated differently as a result of their digital activities and records. Theoretically the paper will frame these issues and case studies within the available literature on Digital Sovereignty. The question of digital sovereignty is understood by the authors as central to deal with issues of independence, control and autonomy over the digital self. It raises Issues of transparency and accountability on several levels, from the Government’s purchasing of digital tools, to potential impact on health worker and algorithmicized decision making process.