The Nordic model for collaboration on health data: insights from an evolving process

Summary

The Nordic countries possess exceptional assets for health data research: decades-long national registers, personal identity numbers enabling precise data linkage, enabling legislation, and high levels of public trust. Translating these advantages into effective cross-border collaboration has nonetheless proven difficult. Data access timelines, fragmented regulatory interpretations across countries, and a reliance on individual enthusiasm rather than formal mandates have all presented persistent challenges.

The VALO project, funded by the Nordic Council of Ministers, was set out to strengthen the foundation for cross-border health data collaboration in the Nordic region. Its aim was to establish common principles across the Nordic countries for implementing the European Health Data Space (EHDS) Regulation, to streamline research, development and innovation, and to demonstrate cross-border data use through concrete pilot studies. Work stream 1 (WS1) has been developing a Nordic model for collaboration on the secondary use of health data – a collaboration framework designed to make the Nordic region the world’s most attractive destination for health data research and innovation.

This interim report documents the journey of that development from mid-2024 through May 2026. It traces the work through its major milestones: a situational analysis and structured stakeholder interviews that identified some of the core barriers; the first public presentation of the proposed Nordic model at the VALO Stakeholder Forum in Gothenburg in May 2025; successive refinements at Competence Forums and the Nordic Health Data Summit in October 2025; the transition from VALO to the expanded VALO2 partnership covering all five Nordic countries and Baltic countries’ representatives as observers; an open unconference at the Radical Health Festival in Helsinki in January 2026; a dialogue with the secretariat of the Nordic Council of Ministers in February 2026; and an intensive governance design workshop at Vitalis in Gothenburg in May 2026.

The model has evolved substantially over this period. Its current form, informed by the triple helix model of innovation, is built around four interdependent components – Knowledge Sharing on Systems and Structures, Research Collaborations and Statistics, Innovation and Industry, and Citizens, Patients and Healthcare Providers – coordinated by a central Driver and framed by an explicit Governance layer. Crucially, citizens and patients are now positioned as core stakeholders in the governance structure, not as a background condition. This reflects a key insight from the Helsinki unconference: public trust in Nordic institutions is present but fragile, and meaningful patient and citizen involvement is essential to sustaining it.

A number of important questions remain open. These include how heavy the governance structure should be at the outset, how the model should be funded sustainably, and how it should relate to the EHDS governance architecture. These questions will be addressed in the final report – Nordic Model for Collaboration on the Secondary Use of Health Data: Steps Toward Implementation (working title) – due in September 2026.

What is clear is that the work has moved from aspiration to architecture. The model now has a concrete governance proposal, an active stakeholder base spanning researchers, industry, patient organisations, policymakers, and the Nordic Council of Ministers, and a clear set of questions to resolve. The foundation for a genuinely collaborative Nordic approach to health data can now be built.