Consolidation and extension phase (2023-2026)
In 2023, the establishment of a Patient Advisory Board (PAB) of the MII was decided with the update of the governance rules of the Medical Informatics Initiative (MII). The PAB is intended to structurally strengthen the involvement of patients in the MII.
Patient Advisory Board (PAB) of the MII
The PAB is to advise the National Steering Committee of the MII on selected topics from a cross-project perspective, for example on the further development of the German Portal for Medical Research Data (FDPG) or on the design of the consent process using broad consent. The Coordination Office coordinates the PAB meetings.
Patient organisations or patient representatives of the MII use cases (Module 3 projects), patient organisations that are members of a Use and Access Committee (UAC) and patient organisations that are involved in the Digital Hubs or the Network of University Medicine (NUM) can participate in the PAB.
Development and networking phase (2018-2022)
The aim of the Medical Informatics Initiative (MII), funded by the German Federal Ministry of Education and Research (BMBF), is to enhance research and patient care through innovative IT solutions. These will enable the sharing and use of data from healthcare and from clinical and biomedical research across multiple entities and sites.
Workshop 2019: "Health data for medical research: How can patients participate?"
But how do citizens in Germany feel about their health data being used for research? Are they willing to provide it in the form of a "data donation"? How can and do patients want to participate in data-driven medical research? And how will new technologies influence their opportunities for participation?
These questions were the focus of an MII workshop on patient participation organised by the TMF - Technology, Methods, and Infrastructure for Networked Medical Research, which took place on 27 August 2019 in Berlin, Germany. Approximately 150 experts in ethics, law, research and patient organisations discussed the willingness of patients to participate in medical research.
Interactive online dialogue event series 2020/21
Based on the results of this first MII workshop on the topic of patient participation, the MII launched the interactive online event series "Medical Informatics Initiative in dialogue with patient representatives" in September 2020 to actively engage in an exchange with patient advocacy groups and patient representatives in Germany. The aim of the format is to provide transparent information about the use of data and research in the framework of the MII and to integrate ideas and feedback from patient organisations at an early stage.
Session 1: The Medical Informatics Initiative: How can patients get involved? (in German)
Session 2: Medical research with health data: How to communicate transparently? (in German)
Session 3: Patient consent in MII – implementing the Broad Consent in an optimal way (in German)
Session 4: The German Portal for Medical Research Data - a user test (in German)