A multidisciplinary team of scientists has received the green light to establish a national research data infrastructure for personal health data called NFDI4Health. The Joint Science Conference (GWK) made the funding decision on June 26 in Bonn. The project is financed jointly by the German federal and state governments. The Berlin Institute of Health (BIH) and Charité – Universitätsmedizin Berlin, represented by Prof. Sylvia Thun and Prof. Fabian Prasser, are also directly involved in the initiative as partner institutions.
“We are very pleased about this decision,” says Prof. Juliane Fluck, spokesperson for NFDI4Health and head of the Applied Research Department at ZB MED – Information Centre for Life Sciences, adding: “Our mission is to enhance the value of research in the areas of epidemiology, public health, and clinical trials. We also want to make high-quality data internationally accessible in accordance with the FAIR principles. The project fully encompasses large epidemiological studies, public health research, and clinical trials in Germany initiated by principal investigators, as well as the joint development of NFDI4Health with the respective research communities.”
Policymakers recognized several years ago that easy access to research data is of vital relevance and forms the basis for future-proof science. In 2016, the German Council for Scientific Information Infrastructures was therefore commissioned by the GWK to make a proposal for the establishment of a national research data infrastructure (NFDI). This initiative, which is financed jointly by the German federal and state governments, is currently being developed as a nationwide competence and infrastructure network that is tasked with managing research data and making it accessible to the entire scientific community.
In three funding rounds coordinated by the German Research Foundation (DFG), a total of up to €85 million in funding will be made available to up to 30 consortia every year for the next five years, with a possibility of extension for another five years.
NFDI4Health is a key component of a modern health system
“The collection and analysis of personal data related to health and medical conditions as well as to important influencing factors are an essential part of developing new therapies, comprehensive healthcare approaches and preventive measures within a modern health system,” explains Prof. Iris Pigeot, director of the Leibniz Institute for Prevention Research and Epidemiology – BIPS and deputy spokesperson for NFDI4Health. “The increasing digitalization is leading not only to considerable growth in the size of the usable data repository, but also to a greater need for descriptive data. Personal health and medical data are a tremendous resource, yet they require special protection. NFDI4Health seeks to combine security and usability.” The aim of the NFDI is to systematically manage scientific and research databases, provide long-term data storage, backup and accessibility, and network the data both nationally and internationally. The main objectives of NFDI4Health are:
1. Enable findability of and access to structured health data
2. Maintain a federal framework for data storage organizations
3. Facilitate the sharing and linkage of personal data in compliance with privacy regulations
4. Establish automated services (e.g., search capabilities, analytical tools)
5. Establish and enhance the interoperability and reusability of data
6. Support use-case driven cooperation between research communities
7. Develop business models to ensure sustainability
NFDI4Health will increase the visibility and accessibility of research data, contribute to reputational gains for scientists that share their data, and foster new collaborations. NFDI4Health is comprised of an interdisciplinary team of 18 partners. Overall, 46 renowned institutions in the health field have confirmed their participation, including large professional societies and major epidemiological cohorts. Some 37 international institutions have provided supporting letters.
Further information about the initiative can be found at www.nfdi4health.de.