Health Data Cooperatives – Citizen Empowerment

Summary

Healthcare is often ineffective and costs are steadily rising. This is in a large part due to the inaccessibility of medical and health data stored in multiple silos. Further -more, in most cases molecular differences between individuals that result in different susceptibilities to drugs and diseases as well as targeted interventions cannot be taken into account. Technological advances in genome sequencing and the interaction of ’omics’ data with environmental data on one hand and mobile health on the other, promise to generate the longitudinal health data that will form the basis for a more personalized, precision medicine.

We posit that empowering citizens by providing them with a platform to safely store, manage and share their health-related data will be a necessary element in the transformation towards a more effective and efficient precision medicine. Such health data platforms should be organized as co -operatives that are solely owned and controlled by their members and not by shareholders. Members determine which data they want to share for example with doctors or to contribute to research for the benefit of their health and that of society. Members will also decide how the revenues generated by granting third parties access to the anonymized data that they agreed to share, should be invested in research, information or education.