Nordic model for collaboration on the secondary use of health data – a proposal

The Nordic countries exhibit exceptional health data capabilities, shared values, and complementary expertise that together create valuable opportunities for research, innovation and policymaking. As the European Health Data Space (EHDS) reshapes health data use across Europe, coordinated action becomes essential to preserve and enhance these regional strengths.

Extensive stakeholder interviews across all Nordic countries reveal a consistent paradox. Researchers and industry representatives universally recognise Nordic data superiority, yet systematic barriers prevent effective collaboration. Researchers describe long access timelines, varying General Data Protection Regulation (GDPR) interpretations across countries, and administrative complexities that force suboptimal single-country strategies. Industry stakeholders identify data access delays as their primary competitive challenge, leading them to avoid cross-border integration entirely. Previous Nordic initiatives have been hindered largely due to reliance on individual enthusiasm rather than institutional commitment. Both groups emphasise the urgency of coordinated action to preserve regional advantages within the emerging EHDS framework.

This report proposes a practical framework for transforming individual national capabilities into coordinated regional strength. The Nordic Model for collaboration on the secondary use of health data consists of three specialised components unified through central coordination. Knowledge Sharing on Systems and Structures coordinates policy and governance functions, building on emerging EHDS infrastructure. The Nordic EHDS2 Competence Forum provides a foundation that could be formalised and expanded. Research Collaboration and Statistics facilitates cross-border coordination through improved information sharing. Innovation and Industry could structure engagement channels through knowledge exchange and partnership opportunities while maintaining clear boundaries with regulatory functions. The Driver component ensures strategic alignment across all components, optimises resources, and maintains the ethical standards essential for public trust. Rather than creating new institutions, the model emphasises the consolidation and coordination of existing Nordic structures, particularly the Nordic Council of Ministers, Nordic Welfare Centre, and NordForsk.

This approach advances a unified value proposition of a Nordic environment empowering stakeholders to collaborate in advancing the utilisation of health data for research, development, innovation, and policymaking to benefit health, wellbeing, and economic prosperity. The vision delivers EHDS leadership through coordinated implementation, research excellence through pooled expertise, evidence-based policymaking through shared insights, and economic value through reduced complexity and enhanced competitiveness.

Development of the Nordic model follows a phased approach. Comprehensive mapping of existing Nordic institutions, working groups and committees that could take on responsibilities or be included in the model. Pilot coordination through specific EHDS implementation challenges demonstrates value and refines mechanisms based on practical experience. Systematic integration builds stronger institutional connections based on success. This pragmatic pathway builds trust before requiring significant commitments from participating countries. Success requires expanded stakeholder engagement, coordinated EHDS implementation with Baltic observer participation in VALO2, clear metrics tracking collaboration outcomes, shared Nordic values, and sustainable operations through enhanced coordination of existing institutions.

The convergence of EHDS requirements, growing global competition, and stakeholder consensus creates both urgency and opportunity. Without coordinated action, Nordic countries risk underutilising their exceptional health data assets. With unified effort, they can transform individual national strengths into an integrated regional powerhouse that establishes global leadership in responsible health data innovation while advancing health outcomes, scientific knowledge, and economic prosperity for all Nordic citizens. VALO2 will advance this agenda, but ultimate success depends fundamentally on sustained political commitment and broad stakeholder engagement across the region.