Berlin, 05/10/2022. The German Portal for Medical Research Data (FDPG) is a one-stop shop for researchers requesting health data from German university hospitals. Using this platform, researchers can conduct feasibility inquiries and request data and biospecimens from routine care for use in their research projects. The portal was presented on this date in Berlin at the symposium of the Medical Informatics Initiative (MII).
Data integration centres have been established at university hospitals nationwide as part of the MII, funded by the German Federal Ministry of Education and Research. These facilities prepare patient data and biospecimens taken during routine care for research projects. They then make them available for medical research purposes in accordance with data protection regulations. The new portal enables researchers to request both data and biospecimens from a central point. Data sovereignty always remains in the hands of the respective facility.
“The German Portal for Medical Research Data is a central search and request portal for researchers. Currently, it can be used to search datasets from all university hospitals. It is also capable of being expanded beyond its current dimensions", says Sebastian C. Semler, TMF Managing Director and Head of the MII Coordination Office. The portal is operated by TMF (Technologie- und Methodenplattform für die vernetzte medizinische Forschung e.V. - Technology, Methods and Infrastructure for Networked Medical Research), which also manages the MII Coordination Office.
Better medical research data
Researchers can request data from the MII core dataset. This covers a wide range of datasets no matter what the indication. Researchers first submit a feasibility request. This tells them how many cases that correspond to their search criteria are available at MII data integration centres across Germany. These can then be requested for medical research purposes.
"The portal provides access to significantly better datasets for research purposes. This is a great advantage for university medicine", emphasises Jens Bussmann, Secretary General of the German Association of Academic Medical Centers (VUD).
The portal will be launched with a test phase. During this phase, only researchers from the MII sites will be able to submit feasibility inquiries and data use requests. Before researchers can request data for use in a research project, they must first submit a positive vote from the ethics committee of their institution. Other researchers will be allowed to request access to patient data and biospecimens for medical research purposes starting in 2023.
Transparent presentation of research projects
The portal creates transparency by publishing all research projects approved within the framework of the MII and their results in a project registry. Researchers, patient organisations and interested parties can find research projects here and make contact with researchers.
Prospects
In the next stage of MII funding, starting in 2023, the functions of the German Portal for Medical Research Data will be further developed to make the portal more user-friendly. Plans include, for example, integrating additional datasets from outpatient and regional sectors, from health insurance companies and from medical registries.
More information:
To the Health Research Data Portalwww.forschen-fuer-gesundheit.de.
Press contact:
Sophie Haderer, Wiebke Lesch, Tel.: 030 − 22 00 24 732, E-Mail: presse@tmf-ev.de
Background:
The aim of the Medical Informatics Initiative (MII) is to digitally connect routine data from patient care throughout Germany and make it available for medical research in order to be able to treat diseases faster and more effectively in the future. All of Germany's university medicine institutions are working on this together with other research institutions, companies, health insurance companies and patient representatives in the four consortia DIFUTURE, HiGHmed, MIRACUM and SMITH.
In the development and networking phase (2018-2022), the BMBF is funding the development of data integration centres at university hospitals with over 200 million euros. From 2023 to 2026, the cooperation between the university medical centres is to be expanded and extended to include new partners.
In addition, the BMBF is funding six "Digital Hubs: Advances in Research and Health Care” with around 50 million euros (2021-2025) as part of the MII. Their task is to transfer (initially in pilot projects) the pioneering work of the university hospitals to other areas of the healthcare system: from outpatient care to rehabilitation and aftercare. To strengthen research and teaching in the field of digital health, the BMBF is also supporting newly established professorships with a total of 21 junior research groups and providing around 30 million euros for this purpose (2020-2026).
A coordination office operated by TMF - Technology, Methods and Infrastructure for Networked Medical Research with the German Association of Medical Faculties (MFT) and the German Association of Academic Medical Centers (VUD) in Berlin is responsible for the national coordination of the MII.