Citizens in Search for a Place in the Digital Health Data Space: A Case Study

Abstract

Background: Digital health solutions have been omnipresent in policy agendas. However, we still need to better understand how citizens experience these developments and, more specifically, how citizens would ideally want such solutions to look like. Objective: We explore the needs and concerns citizens expressed in different phases of the co-creation process for a prototype of a citizen-centred health data platform within a large-scale European project: Smart4Health. Method: We follow a qualitative approach in our analysis of 9 discussion groups in addition to a diverse set of 49 qualitative interviews with citizens and health care professionals. Results: We show how citizens identify the positive potential of health data infrastructures and how they relate digital health to wider developments in contemporary societies. We then outline citizens’ concerns that potentially prevent them from becoming users and thus destabilize the policy vision of digital health. Conclusion: Four preconditions need to be met for citizens to find their place within a digital health data environment: transparency/trust, infrastructural literacy, digital justice, and a careful consideration of the distribution of responsibilities.