Grundlagen für die wissenschaftliche Nutzung umfangreicher Versorgungsdaten in Deutschland – Ergebnisse der AG Data Sharing der Medizininformatik-Initiative

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Toralf Kirsten - , University Hospital Leipzig (Author)
  • Philip Kleinert - , Technology and Methods Platform for Networked Medical Research eV (Author)
  • Marie Gebhardt - , Technology and Methods Platform for Networked Medical Research eV (Author)
  • Johannes Drepper - , Technology and Methods Platform for Networked Medical Research eV (Author)
  • Anne-Katrin Andreeff - , Institute for Medical Informatics and Biometry (Author)
  • Fabian Prasser - , Berlin Institute of Health at Charité (Author)
  • Oliver Kohlbacher - , University Hospital Tübingen (Author)

Abstract

Healthcare data are an important resource in applied medical research. They are available multicentrically. However, it remains a challenge to enable standardized data exchange processes between federal states and their individual laws and regulations. The Medical Informatics Initiative (MII) was founded in 2016 to implement processes that enable cross-clinic access to healthcare data in Germany. Several working groups (WGs) have been set up to coordinate standardized data structures (WG Interoperability), patient information and declarations of consent (WG Consent), and regulations on data exchange (WG Data Sharing). Here we present the most important results of the Data Sharing working group, which include agreed terms of use, legal regulations, and data access processes. They are already being implemented by the established Data Integration Centers (DIZ) and Use and Access Committees (UACs). We describe the services that are necessary to provide researchers with standardized data access. They are implemented with the Research Data Portal for Health, among others. Since the pilot phase, the processes of 385 active researchers have been used on this basis, which, as of April 2024, has resulted in 19 registered projects and 31 submitted research applications.

Translated title of the contribution
Foundations for the scientific use of extensive health care data in Germany-results of the Data Sharing working group of the Medical Informatics Initiative

Details

Original languageGerman
Pages (from-to)648-655
Number of pages8
JournalBundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
Volume67
Issue number6
Publication statusPublished - Jun 2024
Peer-reviewedYes

External IDs

PubMedCentral PMC11166769
Scopus 85191759247

Keywords

Keywords

  • Biomedical Research, Electronic Health Records/statistics & numerical data, Germany, Health Services Research, Humans, Information Dissemination, Medical Informatics, Medical Record Linkage/methods, Models, Organizational