Implementation report on pioneering federated data access for the German National Emergency Department Data Registry

npj Digital Medicine, vol. 8, pp. 94

Abstract

Continuous access to electronic health records will fuel the digital transformation of medicine. For data-sharing initiatives, the challenge lies in ensuring data access aligns with the interests of data holders. Federated data access authorization, where data remains controlled locally, may offer a solution to balance these interests. This paper reports on a digital health implementation of the federated data access authorization system used in the German National Emergency Department Data Registry. Using data from 2017 to 2024, we analyzed the system's effectiveness in managing data access in a nationwide research network of 58 emergency departments. Facilitating access to more than 7.9 million records, 75% of data access queries were authorized within 15 days. The system also supports periodic queries, enabling recurring real-time access. Query volumes grew from 15 to over 23,000 by 2024, with completion rates of 86%. The system may thus serve as a blueprint for data-sharing initiatives worldwide.

Authors 10

1. Jonas Bienzeisler corresponding Aachen Institute of Medical Informatics Medical Faculty

   RWTH Aachen University

   Affiliation as printed

   Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany. jbienzeisler@ukaachen.de

   Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany

2. Alexander Kombeiz Aachen Institute of Medical Informatics Medical Faculty

   RWTH Aachen University

   Affiliation as printed

   Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany

3. Saskia Ehrentreich

   Otto-von-Guericke-Universität Magdeburg

   Affiliation as printed

   Department of Trauma Surgery, Otto von Guericke University, Magdeburg, Germany

4. Ronny Otto

   Otto-von-Guericke-Universität Magdeburg

   Affiliation as printed

   Department of Trauma Surgery, Otto von Guericke University, Magdeburg, Germany

5. Wiebke Schirrmeister

   Otto-von-Guericke-Universität Magdeburg

   Affiliation as printed

   Department of Trauma Surgery, Otto von Guericke University, Magdeburg, Germany

6. Marco Pegoraro Aachen Chair of Process and Data Science Department of Computer Science

   RWTH Aachen University

   Affiliation as printed

   Chair of Process and Data Science (PADS), Department of Computer Science, RWTH Aachen University, Aachen, Germany

7. Dominik Brammen

   Otto-von-Guericke-Universität Magdeburg

   Affiliation as printed

   Department of Trauma Surgery, Otto von Guericke University, Magdeburg, Germany

8. Behrus Puladi Aachen Department of Oral and Maxillofacial Surgery Institute of Medical Informatics Medical Faculty

   Universitätsklinikum Aachen · RWTH Aachen University

   Affiliation as printed

   Department of Oral and Maxillofacial Surgery, University Hospital RWTH Aachen, Aachen, Germany

   Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany

9. Rainer Röhrig Aachen Institute of Medical Informatics Medical Faculty

   RWTH Aachen University

   Affiliation as printed

   Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany

10. Raphael W. Majeed Aachen Institute of Medical Informatics Medical Faculty

    German Center for Lung Research · Universities of Giessen and Marburg Lung Center · RWTH Aachen University

    Affiliation as printed

    Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL), Giessen, Germany

    Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany