National Research Data Infrastructure for Personal Health Data
The goal of NFDI4Health is to bring together data from epidemiological studies, public health research and clinical trials. The multidisciplinary team of researchers aims to establish a national research data infrastructure for personal health data in Germany.
Collecting and analysing personal data related to health and medical conditions – as well as the key factors that influence them – is an essential part of developing new therapies, comprehensive healthcare approaches and preventive measures within a modern health system. Advances in digitalisation are leading to considerable growth in the number of usable data sets, but also to an increasing need for descriptive data. Personal health and medical data are a tremendous resource, yet they require special protection. nfdi4health seeks to systematically manage scientific and research databases, providing long-term data storage, backup and accessibility, and networking the data both nationally and internationally.
The main objectives of NFDI4Health are the following:
- To enable findability of, and access to, structured health data.
- To maintain a federal framework for data storage organizations.
- To facilitate the sharing and linkage of personal data in compliance with privacy regulations.
- To establish automated services (e.g., search capabilities, analytical tools).
- To establish and enhance the interoperability and reusability of data.
- To support use-case-driven cooperation between research communities.
- To develop business models to secure sustainability.
ZB MED’s role in the project
Professor Juliane Fluck is the spokesperson for NFDI4Health:
- coordinating the consortium;
- integrating it into the overall national research data infrastructure;
- establishing connections, particularly to life science infrastructures.
ZB MED is in charge of developing NFDI4Health services by:
- developing search functions and centralised access to personal health data;
- integrating the services into ZB MED platforms.
ZB MED is also involved in establishing standards by:
- developing publishing policies and guidelines for personal health data.
ZB MED will be working closely with its partners and the user community to define the role of data stewards in healthcare by:
- developing training and consulting concepts;
- transferring the NFDI4Health infrastructures to users and collecting feedback;
- conducting a variety of measures to get users more involved.
Duration
1 October 2020 – 30 September 2025
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 Applied Information Technology – FIT; 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 Augsburg
- University of Bonn (Institute for Agricultural Science)
- University of Cologne (University and City Library of Cologne)
- University of Leipzig (Institute for Medical Informatics, Statistics and Epidemiology (IMISE); LIFE-Research Centre for Civilisation Diseases; Centre for Clinical Trials (ZKS))
- University of Applied Sciences Mittweida (Faculty Applied Computer and Bio Sciences)
- University of Göttingen (University Medical Center)
- University of Greifswald (Institute for Community Medicine)
