Transnational health care research – carefully connecting the dots towards a European Health Data Space

On 26/27 June 2023, a cross-national exchange with representatives of the Swiss Personalized Health Network (SPHN), the Dutch national initiative for integrated health data infrastructure (Health-RI) and the German Medical Informatics Initiative (MII) took place in Berlin. 

This Workshop report summarises the outcomes and actions from the presentations and discussions for the various sub-topics, such as consent and legal framework for data reuse, interoperability, methods of data sharing, and financing and sustainability.

The workshop resulted in the following joint vision of the three initiatives:

Making use of similarities in mandates/goals, conditions and solutions.

All three countries have implemented comparable initiatives. They work along similar approaches to make healthcare data available for scientific (re)use and face similar challenges in doing so.

Due to these commonalities, SPHN, Health-RI, and MII plan on joining forces wherever possible. The initiatives aim to strengthen their collaboration, exchange experiences and, if possible, jointly address common challenges.

National infrastructures for the reuse of healthcare data in the Netherlands, Germany and Switzerland

SPHN, Health-RI, and MII have established large-scale work programmes to build a national infrastructure that enables the retrieval and access to health care data. Guiding principles in all three initiatives are FAIR data management and data usage. This is enabled using international standards and terminologies for semantic and structural interoperability. While not all exchange formats in use are identical, bridging these seems viable. A data governance including use and access policies is either already established or corresponding developments are under way.

Potential joint contribution to research at European level

The representatives from the three initiatives agree on exploring the opportunities for expansion of the cooperation between the initiatives and envisage submitting joint funding applications for this aim.

The initiatives target synergies with the upcoming EHDS regulation. This regulation will have the potential to stimulate the establishment of a common framework for health data, including a consistent, trusted, and efficient data governance, standards, data quality labels and practices. Moreover, the planned European Metadata Catalogue will help to identify, describe and compare health data sources and facilitate data sharing and interoperability between different stakeholders in the EHDS framework.

To make the presented visions a reality, activities were defined to intensify and strengthen cooperation between the initiatives. These will have to be addressed jointly in the upcoming months.