Following the first NSG meeting of the year, the MII invited to a political evening on 13.02.2020. In a top-class panel discussion achievements of the first two years, remaining challenges and future goals were discussed in order to further advance medical research for faster diagnoses and targeted therapies in Germany.
After a welcome word by Christian Luft (State Secretary, Federal Minister of Education and Research), three keynote speeches provided initial impulses on the evening’s topic. Thereby the talks of Dr. Thomas Kostera (Bertelsmann Foundation), Esti Shelly (Head of Department Digitalization of the Israeli Ministry of Health) and Dr. med. Markus Leyck Dieken (gematik) illustrated the current gaps in health care digitalization between the German and the Israelian Health System. Markus Leyck Diecken, however, also mentioned new organizational structures and agile project approaches within the Gematik and announced a “race to catch up” and the research compatible ePA for 2023.
In addition to two members of the Bundestag, Stephan Albani (CDU/CSU) and Maria Klein-Schmeink (B90/Greens), Dr. Thomas Kriedel from the National Association of Statutory Health Insurance Physicians (KBV) also took part in the subsequent discussion. Prof. Dr. Ulli Prokosch, who represented the National Steering Committee of the MII as consortium leader of MIRACUM, completed the panel. In the discussion, which was moderated by Rebecca Beerheide (Deutsches Ärzteblatt), special attention was paid to the Patient Data Protection Act (PDSG) which is now available as a draft bill. Within the scope of the MII, this proposed paper is of great interest, especially with regard to the national Licensing of SNOMED CT, the establishment of a German Terminology Competence Center and data donations. As an important step of alignment between the MII and the KBV activities, Ulli Prokosch and Thomas Kriedel both highlighted the established cooperation in defining the MII core data set modules as well as the upcoming ePA medical information objects (MIOs) as FHIR profiles. While those semantic alignments were seen very positive, Ulli Prokosch, however, criticized some further aspects of the current PDSG draft regarding the planned research data center which would hinder a long term integration of the wealth of data currently being consolidated in the German university medicine data integration centers with contents in the future ePA. He therefore emphasized the urgent need to come to an agreement between the MII and the German state data protection officers concerning the specimen text for a modular broad consent.
Overall, important aspects for medical research, which will be highly relevant in the coming months, were addressed at this evening.