Democratizing Health Research Through Data Cooperatives

Summary

We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. The rationale for adopting data cooperatives is that people (healthy and sick) are the legitimate controllers of their personal data. Data cooperatives offer tools for exerting direct control over personal data, and for participating in the democratic governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to pull multifarious types of data in one place, and steer data use according to their motivations, preferences, and concerns. Policy makers can promote the creation of data cooperatives by recognizing citizens’ right to access and to obtain a copy of their own data, and by funding the creation of distributed data infrastructures piloting new data aggregation models.