P.7. Round Table: Building the foundation: Data governance and harmonisation for CVD and diabetes in Europe

Abstract

Abstract   High-quality, comparable and actionable health data are essential for effective cardiovascular and diabetes policy. Yet, across Europe, the capacity to monitor disease burden, track risk factors and evaluate prevention strategies remains constrained by fragmented data systems, heterogeneous technical standards and persistent legal and institutional barriers to cross-border data sharing. Data are generated across multiple settings, hospital records, primary care, surveys and registries, using formats and governance frameworks that rarely achieve interoperability, ultimately limiting both epidemiological surveillance and policy evaluation. This workshop addresses these challenges by bringing together perspectives from international organisations, research institutions and national public health authorities. The discussion will explore structural barriers to data sharing and harmonisation, including uneven technical capacity across Member States, governance fragmentation and the lack of common standards. It will also examine how these limitations affect the ability to monitor cardiovascular and diabetes outcomes and assess the impact of prevention policies at European level. Building on these challenges, the workshop will present concrete solutions emerging from the Joint Action on Cardiovascular Diseases and Diabetes (JACARDI). Contributions from panelists will highlight the development of a common indicator framework to support cross-country comparability, the adoption of the OMOP Common Data Model, and the implementation of ETL processes, ontology mapping and federated analytics to enable privacy-preserving data use. Particular attention will be given to the integration of equity considerations into data systems, including the need to better capture social determinants of health and make currently underrepresented populations visible in surveillance frameworks. The workshop aims to position JACARDI as a practical implementation platform that goes beyond conceptual alignment, demonstrating how Member States can collaborate around shared standards, governance models and technical solutions. It also highlights JACARDI’s role in building institutional capacity and generating real-world evidence on the feasibility, scalability and limitations of data harmonisation approaches across diverse health system contexts. By fostering dialogue between data scientists, epidemiologists and policymakers, the session will contribute to a shared understanding of how European data infrastructure can be operationalised in support of major EU initiatives, including the European Health Data Space and the Safe Hearts Plan. The added value of the workshop lies in its focus on implementation: translating regulatory ambition into concrete practices, tools and lessons that can inform the development of interoperable, equitable and sustainable data systems for cardiovascular and diabetes surveillance in Europe. Key messages • Fragmented health data systems limit CVD and diabetes surveillance in Europe. JACARDI demonstrates how harmonisation and pilot implementation can enable interoperable and actionable data. • Building European data infrastructure requires more than regulation. JACARDI shows how capacity building and collaboration can operationalise data sharing and support equity-oriented public health.