New Publication: “Federated Electronic Health Records for the European Health Data Space”

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Overview of the proposed federated personal health data space. Data is primarily stored on citizens' devices and securely backed up. All data access requests can be individually accepted or declined by the citizen.
22. September 2023

Our paper “Federated Electronic Health Records for the European Health Data Space” by Raab et al. was just published in The Lancet Digital Health. This collaborative effort between the MaD Lab and international experts in medicine, digital health and health policy, presents a novel approach to handling electronic health records that places citizens at the helm of their personal health data, both conceptually and technologically.

The European Health Data Space (EHDS) aims to empower individuals to access and leverage their personal health data while fostering research and development. However, concerns regarding data privacy and security in centralized systems persist. Our paper introduces the concept of “Federated Personal Health Data Spaces,” an innovative architecture that prioritizes individual data sovereignty and privacy. By decentralizing data storage onto personal devices, this approach not only safeguards privacy but also encourages citizens to actively participate in research and responsible data sharing.

Read the full paper (open-access) to learn more about personal health data spaces.

Check out our project TEAM-X which aims to implement the proposed concept on the basis of Gaia-X.