Nordic model for collaboration on the secondary use of health data: steps towards implementation

Summary

This report is addressed to the Nordic Council of Ministers (NCM), concerned national ministries and authorities, and other Nordic health data stakeholders. The Nordic countries are in a strong position to make effective use of health data. Decades of investment in national health registers, the use of personal identity numbers that make linking data possible, and high levels of trust in public institutions provide a solid foundation. Together with the wider Nordic-Baltic region, this represents a population and research base at a scale no single country can achieve alone. Nevertheless, this advantage remains underused. Cross-border collaboration on health data continues to be fragmented. Researchers report that cross-border studies are often abandoned – not because relevant data is unavailable – but because accessing it is not feasible within practical timelines. Also, industry actors avoid cross-border data projects altogether due to the complexity and time involved.

The Value from Nordic health data (VALO) project was launched in 2024 and extended in 2025 (VALO2) to strengthen Nordic collaboration on the secondary use of health data, support joint preparation for the EU’s European Health Data Space (EHDS), and test cross-border collaboration in practice. Through extensive engagement with stakeholders across all five Nordic countries, VALO has developed the Nordic model for collaboration on the secondary use of health data. The model is built around four key groups of actors (researchers; innovators; citizens and patients; and healthcare providers and workforce), supported by a common governance structure that enables coordinated collaboration.

This report focuses on the governance arrangements, since the other elements of the model depend on these arrangements being established. The focus of the VALO projects has been on the secondary use of health data, and the recommendations below reflect that focus. However, as the work developed, the close connection between primary and secondary use became increasingly clear. Thus, the proposed governance structure has been designed so that its mandate can extend to primary use. The report presents four recommendations that set out the initial steps required to move from project-based collaboration to a permanent and sustainable structure:

1. Establish a Nordic Health Data Coordination Committee – building on the existing NCM eHealth Group, with a rotating presidency aligned to the NCM cycle.
2. Establish a permanent Secretariat – to provide institutional continuity and knowledge maintenance across presidency rotations.
3. Endorse and resource a permanent Nordic Health Data Competence Forum – adopting the proven operational structure built through VALO, meeting regularly to support national authorities and expert working groups through EHDS implementation and beyond.
4. Support an annual Nordic Health Data Summit – a public forum convening the whole ecosystem, building on events already run under VALO.

None of these recommendations requires the creation of new structures from scratch. Each recommendation builds on the arrangements and partnerships developed and tested through VALO, as well as earlier Nordic collaboration and initiatives in health data. Together, they are designed to work as a single, coherent structure rather than separate, project-based initiatives. The key requirement now is a commitment from the NCM and national authorities to formalise and sustain these structures with funding and political support, so that decades of national investment in health data can be translated into durable, shared Nordic – and increasingly Nordic-Baltic – advantage.