Federated electronic health records for the European Health Data Space

Raab R, Küderle A, Zakreuskaya A, Stern AD, Klucken J, Kaissis G, Rueckert D, Boll S, Eils R, Wagener H, Eskofier B (2023)

Publication Language: English

Publication Type: Journal article

Publication year: 2023

Journal

The Lancet Digital Health Elsevier

Book Volume: 5

Pages Range: e840-e847

Journal Issue: 11

URI: https://www.thelancet.com/journals/landig/article/PIIS2589-7500(23)00156-5/fulltext

DOI: 10.1016/S2589-7500(23)00156-5

Open Access Link: https://www.thelancet.com/journals/landig/article/PIIS2589-7500(23)00156-5/fulltext

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.

Authors with CRIS profile

René Raab Machine Learning and Data Analytics Lab Arne Küderle Machine Learning and Data Analytics Lab Anastasiya Zakreuskaya Machine Learning and Data Analytics Lab Björn Eskofier Machine Learning and Data Analytics Lab

Related research project(s)

Trusted Ecosystem of Applied Medical Data eXchange; Teilvorhaben: FAU@TEAM-X (TEAM-X) Trusted Ecosystem of Applied Medical Data eXchange (TEAM-X) Jan. 1, 2022 - Dec. 31, 2024

Involved external institutions

Technische Universität München (TUM) DE Germany (DE) University of Luxembourg LU Luxembourg (LU) Berliner Institut für Gesundheitsforschung (BIH) DE Germany (DE) Harvard Business School US United States (USA) (US) Oldenburger Institut für Informatik (OFFIS) DE Germany (DE)

How to cite

APA:

Raab, R., Küderle, A., Zakreuskaya, A., Stern, A.D., Klucken, J., Kaissis, G.,... Eskofier, B. (2023). Federated electronic health records for the European Health Data Space. The Lancet Digital Health, 5(11), e840-e847. https://dx.doi.org/10.1016/S2589-7500(23)00156-5

MLA:

Raab, René, et al. "Federated electronic health records for the European Health Data Space." The Lancet Digital Health 5.11 (2023): e840-e847.

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