-Automatic translation

VALO (Value from Nordic health data) was a joint initiative among the five Nordic countries. Estonia and Lithuania also participated as observers in its second phase. The Nordic Council of Ministers funded the project, and the Finnish Innovation Fund Sitra coordinated it. More than 20 ministries and public institutions took part.

The project focused on the secondary use of health data, defined as using it for purposes other than those for which it was originally collected. Examples include scientific research, innovation, and policymaking. A key driver of the project was the European Health Data Space (EHDS) Regulation, adopted in March 2025, which establishes a common framework for the secondary use of health data across Europe.

Unlocking the Potential of Nordic Health Data

All Nordic countries maintain nationwide health registries spanning several decades. Unique personal identifiers enable data linkage, public trust in government institutions is high, and support for research is generally strong. By using health data collectively across the Nordic region, researchers can build more powerful datasets that support improvements in healthcare services. Until now, however, working with health data across borders has often been complex and time-consuming. Building on these strengths, the VALO project focused on three key areas of work to advance the secondary use of health data across the Nordic region.

The three Key Areas of Work in the VALO Project

Harmonising the Implementation of the EHDS Regulation

Representatives from ministries and public agencies met regularly to exchange experiences and compare national approaches. Discussions covered data access, metadata, and legal and ethical considerations. One outcome of this work is a draft Nordic guide to implementing the EHDS Regulation. Participants expressed a strong commitment to continued collaboration and highlighted the need for a forum to coordinate and align countries' implementation efforts.

Pilot Projects

Two pilot projects tested different approaches to cross-border health data analysis. Both pilots focused on treatments for advanced lung cancer. Participating hospitals harmonised data using the OMOP common data model.

The first pilot used a federated analysis approach. Standardised analysis code was distributed to participating hospitals and run locally on their data. Only aggregated results were then shared. The second pilot allowed a researcher to remotely access data via a secure processing environment (SPE). This enabled analysis without transferring data outside its country of origin.

The pilots demonstrated that the Nordic region already has the technical infrastructure needed to conduct secure cross-border analyses without data leaving its source country. At the same time, they highlighted several challenges. Data access was time-consuming to obtain, authorisation requirements differed between countries, and additional administrative procedures often delayed analysis even after approvals were granted. Furthermore, data standards varied between hospitals, some key data elements were unavailable, and researchers relied heavily on local experts in addition to secure processing environments.

A Nordic Model for collaboration on the secondary use of health data

The Directorate of Health led the development of recommendations to establish a permanent framework for Nordic collaboration on health data beyond the VALO project. These recommendations are based on extensive consultations with stakeholders across all participating countries.

The proposed model is built around four components:

• A Nordic Health Data Coordination Committee to set strategic direction. The proposal builds on the Nordic Council of Ministers’ existing eHealth group and expands its scope to cover both primary and secondary use of health data.

• A Permanent Secretariat to ensure continuity and preserve institutional knowledge, regardless of which country holds the rotating chairmanship.

• A Permanent Nordic Health Data Competence Forum that brings together authorities and experts through dedicated working groups, building on the successful cooperation established during VALO.

• An Annual Nordic Health Data Summit serving as an open forum for all working in this field.

The four components are intended to operate as a single, integrated framework, utilising existing Nordic infrastructure and networks rather than building entirely new structures. The proposals also emphasise the importance of preserving public trust by ensuring that citizens and patients have a voice in the collaboration.

What comes next?

The next step is to secure support from the Nordic Council of Ministers and national governments to establish these structures through long-term funding and political commitment. This would convert decades of investment in health data infrastructure into a lasting competitive advantage for the Nordic region.

Participants from Iceland:

Directorate of Health

Sigríður Haraldsd. Elínardóttir, Head of Division of Health Information
Rebekka Björg Guðmundsdóttir, Project Manager, Division of Health Information
Védís Helga Eiríksdóttir, Project Manager, Division of Health Information

Ministry of Health

Bjarni Sigurðsson, Pharmacist, Department of Administration and Human Resources
Guðríður Bolladóttir, Deputy Director, Department of Administration and Human Resources
Kristín Ninja Guðmundsdóttir, Legal Counsel, Department of Administration and Human Resources

University of Iceland

Hrefna Dögg Gunnarsdóttir, Associate Professor, Faculty of Law, University of Iceland