MII_NUM: Cooperation between MII and NUM

Goals

The aim of the Medical Informatics Initiative (MII) and the Network of University Medicine (NUM) in the consolidation and extension phase of the MII (2023-2026) is to work together in the following areas:

  1. joint training activities (training courses on IT security & patient consent in particular)
  2. connecting the clinical community of the NUM with the work of the MII, in particular with regard to the core data set and the implementation of data usage projects
  3. joint usage and further development of mutually supported infrastructures
  4. operation of joint working group(s)
  5. cooperation and convergence at the management level of NUM and MII; reciprocal representation with guest status in the respective steering committees; joint establishment of a "Coordination Group of Health Research Data Infrastructures (GFDI)" in Germany

The project started on the 1st of July 2023 (start of work packages 2, 4 and 5).

Execution

Coordination Group of Health Research Data Infrastructures (GFDI)

  • MII’s and NUM’s coordination offices have set up a national coordination group for publicly funded health research data infrastructures.
  • Its aim is to promote transparency about existing and planned infrastructures, develop a common approach and draw up a model for the use of health-related data.
  • Stakeholders from research and healthcare are involved.
  • The activities of the coordination group are supported by the BMBF's Health Research Forum.
GFDI-Koordinierungsgruppe

Joint data use projects (DUPs)

  • Data use projects that are applied for via the German Portal for Medical Research Data  are funded as part of the MII.
  • The aim is to promote the application and implementation of projects in the FDPG and to improve data application and provision through feedback from data users.
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  • Four projects funded with 30,000 euros each in 2023
  • 15 further projects planned in 2024 and 2025 respectively
  • Applicants: Clinicians, in particular medical specialists, who are planning medical research with routine data
  • Requirements: innovative, public interest-oriented research questions; study protocol; ethics vote (applied for); feasibility analysis
  • The funded projects were selected on the basis of a scientific review by NUM expert committees.

Outlook

  • The first DUPs were selected jointly by NUM and MII at the beginning of December 2023. The implementation of the projects is planned from February to June 2024. A second call will start in 2024. The structured procedure is intended to make a significant contribution to the involvement of data users (in NUM) and to improving data use projects.
  • The GFDI coordination group is working on a survey and characterisation of infrastructures, with completion planned for 2024.
  • A key activity of the GFDI coordination group was the coordination of a joint commentary on the Health Data Usage Act (GDNG), draft bill and cabinet draft, with corresponding participation in consultation. This is to be continued as required for this and possibly other legislative proposals (e.g. Medical Research Act).
  • Within the framework of the GFDI, the needs and functions of TrustedResearch Environments are to be coordinated.
  • Start of training activities (sub-project 1) is planned for 2024.
  • The first joint working group of MII and NUM, External Data Working Group, has already held several meetings in 2023 and is working on an architecture for data linkage in Germany.
  • The cooperation project successfully brings together measures from MII and NUM and promotes joint networking with other stakeholders in the German healthcare system.

Background

In the development and networking phase of the MII (2018-2022), the focus was on setting up the MII infrastructures at the university hospitals, in particular the data integration centres (DIC) and the patient consent processes. Nevertheless, the first collaborations between the MII and the NUM have already taken place. At the beginning of the coronavirus crisis, the MII was able to support the NUM in combating the pandemic, primarily through the expertise and infrastructure of the DIC. The routine data platform NUM-CODEX (now: NUM-RDP) for COVID patients in German university medicine emerged from a joint project of all MII partners and the NUM. The new funding phase (2023-2027) of the MII funding programme will provide targeted support for joint activities between MII and NUM.

Contact:

Sebastian C. Semler
TMF e.V./MII Coordination Office
info@medizininformatik-initiative.de

Dr Frank Wissing
MFT e.V./MII Coordination Centre

Partners:

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