Health research requires the linking of healthcare-related data

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Wolfgang Hoffmann - , Greifswald University Hospital, German Network Health Service Research (DNVF) , German Center for Neurodegenerative Diseases (DZNE) - Partner Site Rostock/Greifswald (Author)
  • Neeltje van den Berg - , Greifswald University Hospital, German Center for Child and Adolescent Health (DZKJ) - Partner Site Greifswald/Rostock (Author)
  • Jochen Schmitt - , Center for Evidence-Based Healthcare, German Network Health Service Research (DNVF) (Author)
  • Peter Ihle - , University of Cologne (Author)
  • Gabriele Anton - , Bielefeld University (Author)
  • Thomas Datzmann - , Center for Evidence-Based Healthcare (Author)
  • Bianca Franke - , Association of German Tumor Centers (Author)
  • Max Geraedts - , University of Marburg (Author)
  • Simone Gloystein - , Greifswald University Hospital (Author)
  • Sabine Hanß - , University Medical Center Göttingen (Author)
  • Philipp Heinrich - , Medical Faculty Carl Gustav Carus (Author)
  • Elisa Henke - , Institute for Medical Informatics and Biometry (Author)
  • Anne Hennings - , Association of German Tumor Centers (Author)
  • Peter Heuschmann - , University of Würzburg, University Hospital of Würzburg (Author)
  • Thomas Illig - , Hannover Medical School (MHH) (Author)
  • Monika Kraus - , Helmholtz Zentrum München - German Research Center for Environmental Health (Author)
  • Caroline Lang - , Center for Evidence-Based Healthcare (Author)
  • Gabriele Müller - , Center for Evidence-Based Healthcare (Author)
  • Anne Neumann - , Center for Evidence-Based Healthcare (Author)
  • Steffen Ortmann - , Medical University of Lausitz – Carl Thiem, Munich Municipal Hospital Group (Author)
  • Vishnu Priya - , Institute for Medical Informatics and Biometry (Author)
  • Jens-Peter Reese - , University of Applied Sciences Mittelhessen (Author)
  • Ulrich Sax - , University Medical Center Göttingen (Author)
  • Simone Scheithauer - , University Medical Center Göttingen (Author)
  • Olaf Schoffer - , Center for Evidence-Based Healthcare (Author)
  • Martin Sedlmayr - , Institute for Medical Informatics and Biometry (Author)
  • Sebastian Claudius Semler - , Technology and Methods Platform for Networked Medical Research (TMF) (Author)
  • Enno Swart - , Otto von Guericke University Magdeburg (Author)
  • Frank Wissing - , Medical Faculty Association of the Federal Republic of Germany e.V. (Author)
  • Sylke Ruth Zeißig - , Association of German Tumor Centers, University of Würzburg, University Hospital of Würzburg (Author)
  • Ralf Heyder - , Charité – Universitätsmedizin Berlin (Author)

Abstract

Linking project data and data from routine clinical practice with healthcare-related data is essential for German healthcare research in order to answer complex questions validly and efficiently. Currently, fragmented data sources, heterogeneous legal requirements, and a lack of infrastructure prevent the optimal use and linking of these data. The Network University Medicine (NUM) is therefore developing a dedicated data infrastructure to link primary study data and routine clinical data with external healthcare-related data (e. g., data from statutory and private health insurance companies, data from cancer registries of the federal states, and data from registration offices). The position paper describes the various data worlds, including examples from epidemiological and clinical research that illustrate the added value and challenges of data linkage. In particular, it presents the new structures of the data acceptance and processing center (DAAeD) in the NUM, which is intended to enable quality-assured, data protection-compliant receipt and linkage of data. Standardized application and approval procedures as well as innovative privacy-preserving record linkage procedures are central to this. International experience, including from Scandinavia and the UK, demonstrates the benefits of such infrastructures for research and healthcare. In conclusion, we advocate rapid political and institutional implementation of the recommendations described in order to make health research in Germany competitive in international comparison and to ensure sustainable, patient-centered health care.

Details

Original languageEnglish
JournalGesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany))
Publication statusE-pub ahead of print - 17 Apr 2026
Peer-reviewedYes

External IDs

ORCID /0000-0001-6922-7148/work/213149722
ORCID /0000-0002-5002-2676/work/213149745
ORCID /0000-0002-9888-8460/work/213149891
Scopus 105036520401

Keywords

Sustainable Development Goals