Translated from the Press Release (download) by:
Medical Informatics Initiative
Support structure - Office of the National Steering Committee
c/o TMF e. V. ∙ Charlottenstraße 42/Dorotheenstraße ∙ 10117 Berlin
National initiatives for health data infrastructures from Germany, Switzerland and the Netherlands in exchange
Experts from three national initiatives met at a workshop in Berlin on 26 and 27 June 2023 to discuss procedures, hurdles and opportunities in the development of infrastructures for the use of health data for research. The German Medical Informatics Initiative (MII), funded by the Federal Ministry of Education and Research, the Swiss initiative SPHN (Swiss Personalized Health Network) and Health-RI (Health-Research Infrastructure) from the Netherlands were represented. At an evening event with the participation of the EU Commission, the challenges and perspectives of a common European Health Data Space (EHDS) were discussed. The TMF - Technologie- und Methodenplattform für die vernetzte medizinische Forschung e.V. (Technology and Methods Platform for Networked Medical Research), which runs the MII coordination office together with the Medical Faculty Association and the Association of University Hospitals, had invited the participants.
The introduction of the EHDS offers great opportunities for care and research. An intra-European exchange of data would lay the foundation for an improvement in health care and enable the subsequent use of health data for research. In order to successfully meet the requirements of a digital health and research landscape, the development of a common health data architecture or a digital strategy is necessary. In the course of the EHDS, it is more important than ever that care and research are more closely interlinked. The MII, SPHN and Health-RI in Germany, Switzerland and the Netherlands have each created the basis for a decentralised infrastructure and thus relevant preliminary work for the EHDS, but still face many challenges.
At the public evening event of the workshop, Licínio Kustra Mano, advisor for the EHDS at the EU Commission, DG SANTE, spoke about the timeline for the EHDS legal framework. He said that the EHDS law is expected to be adopted next year. He also presented the responsibilities for data holders, the expected benefits from the user's point of view as well as measures for data quality.
Representatives from MII, SPHN and Health-RI discussed the current status of infrastructure development in the three countries in various workshop sessions and addressed similarities and differences. The topics of consent, interoperability, data sharing, legal framework, funding and follow-up were discussed.
"Prerequisites for the sustainable operation of a data infrastructure are a good governance structure, robust funding, a legal basis and a responsible funding body", said Dr Thomas Geiger, SPHN Managing Director.
Dr. Katrin Crameri, Director of Personalised Health Informatics at the SIB Swiss Institute for Bioinformatics and Director of the SPHN Data Coordination Centre, presented the Swiss initiative and explained how Switzerland could contribute to the EHDS even as a non-EU country. SPHN follows a decentralised approach and invests in data quality and interoperability wherever health data is received or produced. The aim is to make it available for secondary use in a responsible and efficient way.
Dr Jan-Willem Boiten, Senior Project Manager Architecture at Health-RI, gave an overview of the Netherlands' project. Health-RI will be funded with 69 million euros from 2022 to 2028. The cooperation with the European partners is very important for the further development of the infrastructure.
Sebastian C. Semler, TMF managing director and head of the MII coordination office, emphasised the need for an "identifier" for linking data within the federated-decentralised data infrastructure. Germany, Switzerland and the Netherlands are on a similar path to the EHDS II on the "Secondary Use" of health data for research and innovation. This is very encouraging for the challenges ahead and offers opportunities for intensified cooperation.
From left to right: Sebastian C. Semler (Medizininformatik-Initiative), Dr Katrin Crameri (SPHN) and Dr Jan-Willem Boiten (Health-RI) gave an overview of the national initiatives for health data infrastructures from Germany, Switzerland and the Netherlands at a joint workshop on the EHDS. The photo is available for editorial coverage. Source: TMF e.V./Volkmar Otto