MIDATA shows how data can be used for the common good, while at the same time ensuring the citizens’ control over their personal data.
Founded in 2015, the nonprofit cooperative operates a data platform, acts as a trustee for data collection and guarantees the sovereignty of citizens over the use of their data.
The MIDATA model is designed for international application: MIDATA Switzerland supports the foundation of regional or national MIDATA cooperatives that share the data platform infrastructure.
At present, MIDATA focuses on health data and smartphone app based services. Startups, IT providers and research groups can connect mobile apps to the platform. The apps may offer data-based services and collect data for analysis. Thus, an open innovation ecosystem emerges.
Owners of a data account at MIDATA may actively contribute to medical research and clinical studies by granting selective access to their personal data. They may become members of the cooperative and thereby control the cooperative.
Personal data are stored on the MIDATA platform. Data account holders can participate in app-based research projects and benefit from app-based services. As cooperative members, they govern the cooperative at the general assembly. In this way, members will increasingly be able to take control over their data and their health.
MIDATA cooperatives are nonprofit institutions. They work best without financial incentives, similar to citizen science platforms or blood donation. Net profits are reinvested into the services offered on the MIDATA platform. These are shaped for the benefit of the public, and they provide high standards of data safety and data protection.
Transparency is ensured by the fact that the governance principles of MIDATA cooperatives are public. Members are informed and can participate in decision making processes. They can also withdraw their personal data at any time.
All datasets are encrypted; only data account holders have access to their individual data. Each access to data is logged. To enable global research and clinical studies, secure data access via individual national cooperatives will be implemented – while at the same time maintaining account holders’ control over their data.
The MIDATA model enables the construction of regional/national cooperatives which, by a set of common rules, permit global research projects to be set up and carried out in a fair and democratic manner.
The MIDATA platform is based on open source software developed at ETH Zurich and Bern University of Applied Sciences BFH. The software is published as “Open MIDATA Server”, under GNU General Public License v3.0.
An ethical and legal framework for MIDATA cooperatives
The model of “citizen-directed” data administration and data sharing is novel and requires transparent processes. MIDATA cooperative provides a safe mechanism for the secondary use of personal data, for consent management and data integration. We are developing the ethical and legal framework for biomedical projects using citizen-generated data held and controlled by the citizens in a cooperative structure. The topics of data protection and data ownership, as well as consent management, are of particular importance.