[The Medical Informatics Initiative at a glance-establishing a health research data infrastructure in Germany]

Area of Science:

• Medical Informatics
• Health Data Science
• Digital Health Infrastructure

Context:

• The German Federal Ministry of Education and Research (BMBF) funded the Medical Informatics Initiative (MII) from 2016-2027.
• The initiative aimed to strengthen medical informatics education and research in Germany.
• Significant investments were made in establishing new professorships, junior research groups, and degree programs.

Purpose:

• To create a decentralized, federated research data infrastructure across German university medical centers.
• To establish the German Portal for Medical Research Data (FDPG) as a central access point for health data.
• To define and implement a modular core dataset (KDS) for secondary data use, adhering to international standards like FHIR, SNOMED CT, and LOINC.

Summary:

• A joint, decentralized federated research data infrastructure was developed, comprising data integration centers (DICs) and the FDPG.
• A modular core dataset (KDS) was implemented for secondary use of patient data, utilizing international standards.
• A nationwide broad consent mechanism was introduced, alongside usage policies and contractual regulations, enabling initial data exports and research projects.

Impact:

• The MII has successfully laid the groundwork for data-based medicine in Germany.
• The established infrastructure enhances expertise in medical data sciences and supports the secondary use of patient data.
• The initiative provides a strong foundation for Germany's contribution to the European Health Data Space (EHDS), boosting its profile as a medical research location.