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

Publikation: Beitrag in FachzeitschriftForschungsartikelBeigetragenBegutachtung

Beitragende

  • Toralf Kirsten - , Universitätsklinikum Leipzig (Autor:in)
  • Philip Kleinert - , Technologie- und Methodenplattform für die vernetzte medizinische Forschung e. V. (Autor:in)
  • Marie Gebhardt - , Technologie- und Methodenplattform für die vernetzte medizinische Forschung e. V. (Autor:in)
  • Johannes Drepper - , Technologie- und Methodenplattform für die vernetzte medizinische Forschung e. V. (Autor:in)
  • Anne-Katrin Andreeff - , Institut für Medizinische Informatik und Biometrie (Autor:in)
  • Fabian Prasser - , Berliner Institut für Gesundheitsforschung in der Charité (Autor:in)
  • Oliver Kohlbacher - , Universitätsklinikum Tübingen (Autor:in)

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.

Details

OriginalspracheDeutsch
Seiten (von - bis)648-655
Seitenumfang8
FachzeitschriftBundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
Jahrgang67
Ausgabenummer6
PublikationsstatusVeröffentlicht - Juni 2024
Peer-Review-StatusJa

Externe IDs

PubMedCentral PMC11166769
Scopus 85191759247

Schlagworte

Schlagwörter

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