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Gesundheit – gemeinsam. Kooperationstagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie (GMDS), Deutschen Gesellschaft für Sozialmedizin und Prävention (DGSMP), Deutschen Gesellschaft für Epidemiologie (DGEpi), Deutschen Gesellschaft für Medizinische Soziologie (DGMS) und der Deutschen Gesellschaft für Public Health (DGPH)

08.09. - 13.09.2024, Dresden

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The German Central Health Study Hub – a service to find and publish clinical, public health and epidemiolocal studies and associated documents

Meeting Abstract

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  • Johannes Darms - ZB MED - Information Centre for Life Sciences, Köln, Germany
  • Vera Clemens - ZB MED - Information Centre for Life Sciences, Köln, Germany
  • Marisabel Gonzalez-Ocanto - ZB MED - Information Centre for Life Sciences, Köln, Germany
  • Claudia Brünings-Kuppe - Leibniz Institute for Prevention Research and Epidemiology - BIPS, Bremen, Germany
  • Selim Cici - Leibniz Institute for Prevention Research and Epidemiology - BIPS, Bremen, Germany
  • Juliane Fluck - ZB MED - Information Centre for Life Sciences, Köln, Germany; Institute of Geodesy and Geoinformation, Agricultural Faculty, University of Bonn, Bonn, Germany

Gesundheit – gemeinsam. Kooperationstagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie (GMDS), Deutschen Gesellschaft für Sozialmedizin und Prävention (DGSMP), Deutschen Gesellschaft für Epidemiologie (DGEpi), Deutschen Gesellschaft für Medizinische Soziologie (DGMS) und der Deutschen Gesellschaft für Public Health (DGPH). Dresden, 08.-13.09.2024. Düsseldorf: German Medical Science GMS Publishing House; 2024. DocAbstr. 784

doi: 10.3205/24gmds005, urn:nbn:de:0183-24gmds0058

Veröffentlicht: 6. September 2024

© 2024 Darms et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe http://creativecommons.org/licenses/by/4.0/.

Gliederung

Text

Introduction: The German Central Health Study Hub is a service that was initially developed at short notice during the COVID-19 pandemic. Since then, it has been expanded in scope, content, active users and functionality. The service is aimed at two main audiences: data provider and data consumers. The former want to share research data from clinical, public health and epidemiological studies and related documents according to the FAIR criteria for research data, and the latter want to find and ultimately reuse relevant research data in the above areas.

Methods: The service connects both groups via graphical and programmatic interfaces. A sophisticated information model is employed to describe and publish various research data objects while obeying data protection and fulfilling FAIR requirements. The service is being developed in a demand-driven manner with extensive user interaction.

Results: A free-to-use service, built on open-source software (Dataverse, MICA, Keycloak), accessible via a web-browser. In close collaboration with users several features (ranging from collection to group items to combined data capture via API and UI) were created. The adoption of the service increases continuously and results in over 1,970 research data objects in June 2024.

Conclusion: The service fills a marked gap and connects both user groups, yet it still needs to be improved in various dimensions (features, content, usage). The impact on the community needs to be further assessed. Despite recent legislative changes (GDNG, EHDS), the system improves the findability of sensitive data, provides a blueprint for similar systems and shows how to create a useful and user-friendly service together with users.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.