Publications
Publications
- November 2023
- Lancet Digital Health
Federated Electronic Health Records for the European Health Data Space
By: René Raab, Arne Küderle, Anastasiya Zakreuskaya, Ariel Dora Stern, Jochen Klucken, Georgios Kaissis, Daniel Rueckert, Susanne Boll, Roland Eils, Harald Wagener and Bjoern Eskofier
Abstract
The European Commission's draft for the European Health Data Space (EHDS) aims to empower citizens to access their personal health data and share it with physicians and other health-care providers. It further defines procedures for the secondary use of electronic health data for research and development. Although this planned legislation is undoubtedly a step in the right direction, implementation approaches could potentially result in centralised data silos that pose data privacy and security risks for individuals. To address this concern, we propose federated personal health data spaces, a novel architecture for storing, managing, and sharing personal electronic health records that puts citizens at the centre—both conceptually and technologically. The proposed architecture puts citizens in control by storing personal health data on a combination of personal devices rather than in centralised data silos. We describe how this federated architecture fits within the EHDS and can enable the same features as centralised systems while protecting the privacy of citizens. We further argue that increased privacy and control do not contradict the use of electronic health data for research and development. Instead, data sovereignty and transparency encourage active participation in studies and data sharing. This combination of privacy-by-design and transparent, privacy-preserving data sharing can enable health-care leaders to break the privacy-exploitation barrier, which currently limits the secondary use of health data in many cases.
Keywords
Analytics and Data Science; Cybersecurity; Information Management; Knowledge Sharing; Knowledge Use and Leverage; Health Industry
Citation
Raab, René, Arne Küderle, Anastasiya Zakreuskaya, Ariel Dora Stern, Jochen Klucken, Georgios Kaissis, Daniel Rueckert, Susanne Boll, Roland Eils, Harald Wagener, and Bjoern Eskofier. "Federated Electronic Health Records for the European Health Data Space." Lancet Digital Health 5, no. 11 (November 2023): e840–e847.