The new “Task Force COVID-19” is funded by the German Research Foundation (DFG) and aims to make it easier for experts to find COVID-19 studies and exchange relevant data. The Task Force is part of the national German research data infrastructure for personal health data, “nfdi4health,” and should enable the pandemic to be combated more efficiently and the negative consequences for the population to be softened. To that end, the Heidelberg Institute for Theoretical Studies (HITS) is contributing to this initiative with its expertise in scientific databases and data standardization.
Research on the corona pandemic has led to a wealth of studies in a short period of time. In order to pool this valuable data, the “Task Force COVID-19” aims to create a comprehensive inventory of German studies on COVID-19 with structured health data from study registries, health databases, primary care, epidemiological and clinical studies (including vaccination studies), and health reporting. In addition, the working group will also develop guidelines, training material, and standards for data management as well as for the use of data, etc. The information will be made available via the websites of the Task Force COVID-19 and the “Competence Network Public Health COVID-19,” an ad hoc association of over 25 scientific societies and organizations. The Task Force of 11 partners is now funded with approximately EUR one million by the German Research Foundation (DFG).
HITS: Linking data from different sources and standardizations
Data on COVID-19 are being collected on individuals through various studies that are currently in progress. However, there are no structures in place to link information referring to the same individuals: a so-called “record linkage.” The Task Force is thereby developing a concept for linking the various relevant data sources, such as hospital data, outpatient prescription data, sequencing data, image data, socio-demographic data, and psychosocial data. A tailored data protection concept will be developed for this purpose.
HITS is contributing its many years of expertise with scientific databases, and the SEEK platform developed at HITS with partners in the UK plays a central role as a “hub” for bundling data and “metadata” (data about data). HITS data specialists in Dr. Wolfgang Müller’s SDBV group are currently adapting the SEEK software along with project partners in Leipzig, Göttingen, and Greifswald in order to meet these requirements. Together with project partner ZB Med in Cologne, the HITS researchers are developing a search portal that will access these data in order to make it easier for users to find them.
Moreover, HITS is also contributing its experience in the standardization of data. HITS scientist Martin Golebiewski is the head of a working group of the International Organization for Standardization (ISO) and is involved in scientific standardization initiatives. Together with partners from the Task Force, he selects suitable data standards for harmonizing the structuring of the most important core data elements of COVID-19 studies. This process forms the basis of a data model that will capture and structure data from all German studies and harmonize their metadata description.
A part of the research data infrastructure for health data
The Task Force COVID-19 arose as part of the “nfdi4health” initiative and consists of a multidisciplinary team of scientists that will establish a research data infrastructure for personal health data in Germany.
“I am pleased to report that the Task Force COVID-19 will contribute to combating the COVID-19 pandemic more effectively,” says Prof. Dr. Juliane Fluck, spokesperson for nfdi4health and head of the knowledge management research group at ZB MED – Information Centre for Life Sciences in Cologne. “The mission of nfdi4health is to increase the value of research in epidemiology, public health, and clinical trials. To that end, we want to make high-quality data internationally accessible in line with the FAIR principles. The extremely dynamic development of the pandemic has demonstrated how important the fast and easy exchange of such data is.”
nfdi4health consists of an interdisciplinary team of 18 partners. A total of 46 renowned institutions from the healthcare sector have confirmed their participation, including major professional associations and epidemiological cohorts. Letters of support have been received from 37 international institutions.
The nfdi4health Task Force COVID-19 includes:
Prof. Dr. Iris Pigeot, Prof. Dr. Wolfgang Ahrens, Leibniz Institute for Prevention Research and Epidemiology – BIPS
Prof. Dr. Juliane Fluck, Birte Lindstädt, ZB MED – Information Centre for Life Sciences
Dr. Linus Grabenhenrich, Robert Koch Institute
Prof. Dr. Ing. Horst K. Hahn, Fraunhofer Institute for Digital Medicine MEVIS
Dr. med. Sebastian Klammt, Network of the Coordination Centers for Clinical Trials (CTCs)
Prof. Dr. Markus Löffler, Prof. Dr. Markus Scholz, Dr. Frank Meineke, Matthias Löbe, IMISE, Leipzig University
Dr. Wolfgang Müller, Martin Golebiewski, Heidelberg Institute for Theoretical Studies (HITS)
Prof. Dr. Ulrich Sax, Dr. Harald Kusch, Department of Medical Informatics of the University Medical Center Göttingen
Prof. Dr. Ing. Toralf Kirsten, Mittweida University of Applied Sciences
Prof. Dr. Carsten Oliver Schmidt, Prof. Dr. Dagmar Waltemath, Greifswald , University Medicine, Institute for Community Medicine (ICM)
Prof. Dr. Sylvia Thun, Berlin Institute of Health (BIH) / Charité – Universitätsmedizin