National Research Data Infrastructure for Personal Health Data
NFDI4Health has been establishing standardised structures for health data from epidemiological, clinical and public health studies across Germany since 2020. Through the Health Study Hub search platform, a wide range of data sources – such as population studies, long-term observations and clinical registries – are made visible and easy to locate. Together with numerous partners and supporters, NFDI4Health has also developed standardised procedures, a metadata schema and various software solutions. Through training opportunities and knowledge exchange formats, NFDI4Health also strengthens users’ data literacy.
Cooperation and Cultural Change
Close collaboration with national and international partners has always been and continues to be key for NFDI4Health. In cooperation with the Medical Informatics Initiative (MII) and the Network University Medicine (NUM), key components such as search platforms and application processes for access to sensitive health data are being continuously developed. At the international level, NFDI4Health is actively involved in the European Health Data Space (EHDS) and the European Open Science Cloud (EOSC). But it’s not just about technological innovation: NFDI4Health also promotes a culture of responsible handling of health data. In doing so, it deliberately includes the perspectives of patients and the wider public.
Goals for the 2nd funding phase
The consortium aims to embed its services more deeply into researchers’ day-to-day work. The NFDI4Health team is further developing existing tools and standards, testing them in real-world scenarios, and increasing their visibility through new communication channels. To this end, a helpdesk will be set up, for example, to serve as a central point of contact for all questions and concerns.
ZB MED’s role in the project
- Prof. Dr. Juliane Fluck is deputy head of the second funding phase
- Networking of the NFDI
- Further development of NFDI4Health services (with partners from BIH and TMF)
- Health Study Hub
Duration
- 1 October 2020 – 30 September 2025 (1st funding phase)
- 1 October 2025 – 31 December 2028 (2nd funding phase)
Funding bodies
German Research Foundation (DFG)
Partners
- Leibniz Institute for Prevention Research and Epidemiology – BIPS
- Charité – Universitätsmedizin Berlin, Berlin Institute of Health
- German Institute for Human Nutrition Potsdam-Rehbrücke – DIfE
- Fraunhofer Society (Fraunhofer Institute for Digital Medicine – MEVIS; Fraunhofer Institute for Algorithms and Scientific Computing SCAI)
- Heidelberg Institute for Theoretical Studies – HITS
- Network of Coordinating Centers for Clinical Trials – KKSN
- Max Delbrück Center for Molecular Medicine – MDC
- Robert Koch Institute – RKI
- Technology, Methods, and Infrastructure for Networked Medical Research – TMF
- University of Cologne (University and City Library of Cologne)
- University of Leipzig (LIFE-Research Centre for Civilisation Diseases)
- University Medical Center Göttingen
- Greifswald University Medicine
