Governance of Digital Health Data on Cooperatively Organized Platforms – a Design Thinking Approach

Abstract

More and more stakeholders are collecting data for improving their services: from scientific research over public administration to commercial enterprises. Existing data management services offer few rights of co-determination for their users. Data cooperatives aim to provide a democratic alternative to this. Through such a platform cooperative members are supposed to be enabled to share their data in a self-determined way. In this paper, we present a design thinking-based user research with stakeholders of data cooperatives in a health-data context. We provide an overview of motivations, expectations, and interfaces between a cooperative and individuals as cooperative members, organizations, representatives from research, and policy makers. In an iterative process, 34 interviews were conducted with different stakeholder groups, from which 7 personas were subsequently derived. For these, 4 prototypes were developed and tested with potential users. Our results show that all interviewed groups were very interested in the concept of data cooperatives. At the same time, it proves challenging to reconcile the conflicting internal and external requirements and to implement attractive value propositions for all stakeholders.