Project: MII-Gaia

MII-Gaia aims to combine two approaches: on the one hand, the Medical Informatics Initiative (MII) and the University Medicine Network (NUM), which focus on the use of secondary data in the research sector; and on the other hand, the highly patient-centred approaches of the Gaia-X health data space projects.

Whilst the MII and the NUM provide a robust solution for the secondary use of health data based on broad consent through the Health Research Data Portal (FDPG), the HEALTH-X approach complements this with application-specific release of specific health data in the form of data donations by the individuals concerned themselves.

To this end, a new data trustee model (DTM) is being developed based on the findings of the MII, linked to the Charité’s DTM and HEALTH-X’s consent processes. This new DTM is illustrated using data exchange processes in both data spaces. To this end, the tools and methods established in the MII / NUM are being integrated in a complementary manner with HEALTH-X’s citizen-centred approach: personal health data is made available to research in a citizen-centred manner (i.e. following individual consent from citizens), pseudonymised or anonymised as required and with consent. By combining self-reported patient data and clinical data in a manner compliant with the General Data Protection Regulation (GDPR), the aim is to demonstrate the interoperability of the patient and clinic data spaces based on the MII-Charité DTM.