Support Structure of the Medical Informatics Initiative

Since 2016, the TMF has been organizing and supporting, together with the Medical Faculty Association (MFT) and the Association of University Hospitals in Germany (VUD), the support structure of the Medical Informatics Initiative (MII) of the BMFTR. The TMF leads the coordination office of the MII. The staff of the support structure work here, and the meetings of the committees take place. This allows for close integration with the TMF's activities as the umbrella organization for IT infrastructures and research data management in medicine. The project ended on June 30, 2023, after a twelve-month extension. The activities of the coordination office will continue from July 1, 2023, as part of the 4C4MII project (see page xx).

About the Medical Informatics Initiative: Connecting. Researching. Healing.

Goals and Phases of Funding

The goal of the MII is to digitally network routine data from patient care nationwide and make it available for medical research to enable faster and more effective treatments in the future. All institutions of university medicine in Germany are working together with other research institutions, companies, health insurance providers, and patient organizations in four consortia: DIFUTURE, HiGHmed, MIRACUM, and SMITH. 

The BMFTR is funding the consortia, data integration centers (DIZ), and the cross-consortium use cases in the establishment and networking phase (2018 to 2022) and the current expansion and extension phase (2023 to 2026) with a total of over 400 million euros. From 2023 to 2026, the collaboration between university medicine sites will be expanded and new partners added.
 

Transsectoral Networking

Additionally, the BMFTR is funding six Digital Progress Hubs in Health with around 50 million euros (2021–2025) as part of the MII. Their task is to bring the pioneering work of university hospitals into other areas of the healthcare system, starting with pilot projects: from outpatient care in practices to rehabilitation and aftercare.

Medical Informatics in Teaching

Well-trained professionals are a key success factor for the initiative. Therefore, the BMFTR is additionally supporting 21 junior research groups with around 30 million euros (2020–2026) to assist newly established medical informatics professorships.

Data Integration Centers

The MII aims to make the most of the opportunities offered by digitalization in medicine for healthcare and research. To this end, data integration centers have been established at university medical sites. These centers create the technical and organizational conditions for secure, cross-site, and cross-institutional data exchange between healthcare and medical research.

Committees

Within a support structure, representatives from all the funded consortia and the coordination office regularly come together in the National Steering Committee (NSG) to coordinate their work and align decisions. The NSG is supported by workgroups focused on topics such as consent, data sharing, external data, interoperability, and communication, which develop and discuss technical foundations. A dialogue forum involves relevant stakeholders in the strategic planning and development of the MII. Experts from the Scientific Advisory Board advise the NSG on overarching international issues. The coordination office, which the TMF runs together with MFT and VUD, is responsible for the overall collaboration and coordination of the MII. It is based at the TMF in Berlin, where the staff of the support structure works, and the meetings of the committees take place. This enables and supports the close integration with the workgroups, projects, and strategic activities of the TMF as the umbrella organization for IT infrastructures and research data management in medicine.

Activities and Progress 2023

• Commissioning of the research data infrastructure with the FDPG and the connected DIZ
• Establishment of DIZ at additional (non-university) sites and connection to central subsystems of the research data infrastructure, including FDPG, DSF, and DMSt
• Execution of the first regular data usage projects utilizing the infrastructure

Activities and Progress 2022

• Strengthening the collaboration between doctors, computer scientists, and researchers from various disciplines at all German university hospitals to create conditions for the joint use of patient data for medical research
• Establishment of data integration centers (DIZ) at additional locations
• Expansion of the consent form usage at additional locations
• Further specification of core dataset modules
• Application of usage agreements
• Development and publication of the research data portal for health (FDPG, formerly ZARS)
• Establishment of Use and Access Committees at university hospitals
• Integration of additional partners into the MII, roll-out of use cases, networking with other European/international initiatives
• Cross-sectoral networking through the new Digital Progress Hubs in Health
• Strengthening of research and teaching: Junior research groups support newly created medical informatics professorships
• Continuation of communication efforts in the areas of patient and professional communication, editorial support for MII channels, and organization of the MII Symposium (see page 12)
• Organization and execution of twelve meetings and web conferences of the National Steering Committee, 23 meetings of the four MII workgroups, six MII workshops and events, 87 web conferences and meetings of task forces, 100 web conferences of core dataset module teams, and one meeting of the dialogue forum following the MII annual meeting
• Support for 56 meetings of the use cases POLAR_MI, CORD_MI, and ABIDE_MI

Activities and Progress 2021

• Sustaining Collaboration Among Medical Doctors, Computer Scientists, and Researchers from Other Disciplines at All German University Hospitals
• Use of the consent form at university hospitals
• Participation framework contract approved
• Data protection concept for data sharing in projectathons approved
• Successful external audit of data integration centers
• Introduction of medication documentation (MMI)
• Release of core dataset baseline modules
• Successful testing of feasibility inquiries in projectathons
• Awarding of services for the development and implementation of the research data portal (FDPG, formerly ZARS)
• Use of MII infrastructure for the Network of University Medicine (NUM), especially NUM-CODEX
• Agreement on the requirements for a terminology server for MII
• Release of the core dataset extension module for consent
• Definition of information models for the core dataset extension modules: Symptoms/Clinical Phenotype, Intensive Care, Consent, Biobank/Bioprobes, and Structural Data
• Strengthening of research and teaching: Junior research groups support newly created professorships in the field of medical informatics
• Continuation of communication efforts in patient and professional communication, further development of the MII website, development, and implementation of a social media concept for the MII
• Organization and execution of twelve meetings and web conferences of the National Steering Committee (NSG), 23 meetings of the four MII workgroups, 19 MII workshops and events, 91 web conferences and task force meetings, 45 web conferences of various teams, 136 web conferences of the core dataset module teams, and one meeting of the dialogue forum following the MII annual meeting. Additionally, the coordination office supported 46 meetings for the use cases POLAR_MI, CORD_MI, and ABIDE_MI.
• Management of the MII SharePoint as a collaboration platform

Activities and Progress 2020

• Inclusion of additional sites in the funded consortia of the MII
• Strengthening the collaboration of doctors, computer scientists, and researchers from other disciplines at all German university hospitals to create conditions for the joint use of patient data for medical research
• Acceptance of the model text for patient consent by data protection authorities and start of using the consent form at university hospitals
• Usage regulations approved
• Standard contract for the use of patient data, biomaterials, analytical methods, and routines within the MII approved
• Preliminary concept for a Central Application and Register Office (ZARS) as a one-stop agency for researchers
• Further specification of core dataset modules
• Introduction of SNOMED CT within the MII in Germany
• Cooperation between MII and KBV
• Launch of the joint use cases CORD and POLAR
• Strengthening of research and teaching
• Expansion of communication efforts, particularly patient communication (explanatory video, microsite, and flyer) and patient participation (online dialogue event series), as well as professional communication and the further development of the MII website
• Organization and execution of 14 meetings and web conferences of the National Steering Committee and the four MII workgroups, 26 MII workshops, and 126 web conferences and meetings of task forces and teams
• Support for the MII SharePoint as a collaboration platform for joint work with workgroup and task force members on documents and files

Activities and Progress in 2019

• Inclusion of additional sites into the funded consortia of the MII, so that now all university medical institutions in the MII are working together
• Strengthening collaboration between doctors, computer scientists, and researchers from other disciplines across all German university hospitals to create the conditions for the joint use of patient data for medical research
• Completion of the model text for the nationwide patient consent form in version 1.6a, and extensive coordination of this version with ethics committees and data protection authorities, as well as completion of version 1.7 and approval of this version by the NSG
• First version of the model usage agreement approved

Activities and Progress in 2018

• Inclusion and integration of 16 additional sites into the funded consortia of the MII
• Strengthening collaboration between doctors, computer scientists, and researchers from other disciplines at all German university hospitals to create the conditions for the joint use of patient data for medical research
• Completion of version 1.5 of a unified patient consent form, which has been coordinated with all data protection authorities
• Decision by the National Steering Committee to use LOINC as the standard for coding analytes in laboratories and coordination of an initial LOINC subset with the top 300 analytes
• Collection of initial experiences with organizational and technical processes, as well as the availability and use of data for joint analysis using a demonstrator
• First discussions on scenarios, fundamental processes, and central structures for using data from the MII data integration centers by researchers
• Development of a communication strategy, implementation of corporate design, and editorial support for the website
• Organization and execution of five meetings and one web conference of the National Steering Committee, around 15 meetings and five web conferences of the four MII workgroups, eleven MII workshops, about 50 web conferences by task forces and teams, as well as one meeting of the dialogue forum following the MII annual meeting
• Establishment of the MII SharePoint as a collaboration platform for joint work with members of the workgroups and task forces on documents and files, currently with around 230 registered users

D-081-02 MII Support Structure II (Establishment and Networking Phase) 

Project Leader: Sebastian C. Semler (TMF) 
Project Duration: 07/18 – 06/23 
Funding Amount (TMF Share): 4,535,760 €
Funding Agency: Federal Ministry for Research, Technology, and Space (BMFTR) 
Funding Identifier: 01ZZ1805