Getting health data into shape

A multidisciplinary team is set to establish a research data infrastructure for personal health data in Germany: nfdi4health. The project – along with 8 other German research data infrastructures – will be funded by both the German Federal Government and German state governments. The Heidelberg Institute for Theoretical Studies (HITS) will be directly involved in the initiative as a partner. HITS will make its software suite “SEEK” available to the initiative and assume a leading role in the data standardization.

“Our mission is to increase the value of research in the fields of epidemiology, public health, and clinical trials,” says Prof. Dr. Juliane Fluck (ZB MED, Cologne), spokesperson for nfdi4health. “To that end, we want to make high-quality data internationally accessible in line with the FAIR data principles. We will provide complete coverage of large epidemiological studies and public health research, as well as clinical studies that are initiated by investigators in Germany, and we will jointly develop nfdi4health with our user community.”

HITS will offer a data platform and set standards

As one of 18 partners in the initiative, HITS will bring its many years of expertise with scientific databases and its experience in data standardization to the table. Developed at HITS with partners in the UK, the SEEK platform will play a central role as a “hub” for data bundling, especially for metadata from various studies that are collected and sorted in nfdi4health. HITS data specialists in Dr. Wolfgang Müller’s SDBV group will adapt the SEEK software to meet these requirements along with project partners in Leipzig, Göttingen, and Greifswald. Together with project partner ZB Med in Cologne, the HITS researchers will also develop a search portal that will access these data in order to make it easier for users to find them.

HITS scientist Martin Golebiewski will assume leadership of the nfdi4health work package “Standards for FAIR Data.” Together with other contributors of the work package, he will adapt and harmonize relevant data standards and thereby lay the foundation for a bundling and structuring that will facilitate finding and comparing the collected personal health data. Golebiewski has been involved for several years in standardization committees at the International Organization for Standardization (ISO) and in scientific initiatives. “Our goal is to quickly and purposefully adapt standards to the requirements of the data in nfdi4health and, if necessary, to initiate the development of new standards,” says the HITS scientist.

nfdi4health: Paving the way for modern healthcare research

Progressive digitization is leading to considerable growth in the volume of data that can be used for this purpose as well as to an increased demand for descriptive data. Personal health- and illness data serve as an excellent resource but also require special protection. nfdi4health aims to systematically interlink and sustainably secure the databases collecting such data from science and research, as well as to make them accessible and to connect them (inter-)nationally.

The initiative consists of an interdisciplinary team of 18 partners. A total of 46 renowned institutions from the health sector have confirmed their participation, including major professional associations and epidemiological cohorts. Letters of support have been received from 37 national and international institutions.

In support of the establishment and promotion of all research data infrastructures, both the German Federal Government and individual states together intend to provide up to EUR 90 million annually until 2028, with the intention to create a long-term sustained platform supporting research.

nfdi4health press release