Governance and IT Architecture

Personalized medicine relies on the integration and analysis of diverse sets of health data. Many patients and healthy individuals are willing to play an active role in supporting research, provided there is a trust-promoting governance structure for data sharing as well as a return of information and knowledge. MIDATA.coop provides an IT platform that manages personal data under such a governance structure. As a not-for-profit citizen-owned cooperative, its vision is to allow citizens to collect, store, visualize, and share specific sets of their health-related data with friends and health professionals, and to make anonymized parts of these data accessible to medical research projects in areas that appeal to them. The value generated by this secondary use of personal data is managed collectively to operate and extend the platform and support further research projects. In this chapter, we describe central features of MIDATA.coop and insights gained since the operation of the platform. As an example for a novel patient engagement effort, MIDATA.coop has led to new forms of participation in research besides formal enrolment in clinical trials or epidemiological studies.