From Data Fragmentation to Integrated Surveillance: JACARDI’s Monitoring Roadmap in the EHDS Era

Background

Cardiovascular diseases (CVD) and diabetes mellitus (DM) are leading causes of mortality and morbidity in the EU. Amid EHDS implementation, strengthening secondary use of health data for chronic disease surveillance is a strategic priority. However, fragmentation in governance, legislation, financing, and interoperability continues to limit national data systems.

Methods

Within JACARDI, a structured online survey was completed by 20 National Focal Points via JANFP4Health. The survey assessed national CVD and DM systems against an expert-validated “ideal state” framework covering population, healthcare, and patient levels, including governance, financing, and equity. Questions with >50% missing or non-variable responses were excluded.

Results

A marked strategy–legislation gap emerged. For DM, 75% of countries reported a national strategic framework, but only 20% had disease-specific registry legislation. For CVD, only 25% reported both strategic frameworks and registry legislation. Stable funding was limited; only 30% of DM systems reported structural financing, while CVD funding was frequently project-based. Equity-related and patient-reported indicators were included in only 20% of DM registries. There is a critical lack of harmonised data on shared risk factors (e.g., obesity, lifestyle), limiting the ability to implement cross-disease prevention strategies. 42 JACARDI pilots demonstrated scalable solutions across: technical innovation (automated extraction, data linkage), governance (regional-to-national scaling, legal structuring), and patient-centred innovation (PROMs/PREMs, migrant background data).

Conclusions

JACARDI provides proof of concept that interoperable, sustainably financed chronic disease data systems are feasible across Member States. Aligning legislation, financing, and interoperability standards is essential to support EHDS implementation and strengthen equitable surveillance of CVD and DM in Europe.

Key messages

• JACARDI proves that interoperable, sustainably financed data systems are feasible for the EHDS. We must bridge the gap between national strategy and legislation to enable effective NCD surveillance.

• Standardizing data on shared risk factors and patient-centered outcomes is vital. Aligning EU interoperability standards will reduce reporting burdens and strengthen cross-border disease prevention.