Nordic countries pave the way for using health data across borders

The Value from Nordic health data (VALO) project, coordinated by Sitra and funded by the Nordic Council of Ministers, set out to ease the use of Nordic health data across borders. It engaged Nordic ministries and authorities in coordinating their approaches to the EHDS rules on the secondary use of health data, that is, reusing it for research and innovation. The project also ran two cross-border pilot studies and proposed a model for long-term Nordic health data cooperation. The results are presented in four reports.

“I’m incredibly proud of what this Nordic collaboration has achieved. We have proven that cross-border health studies are possible in the Nordics. We have also brought together stakeholders from academia, industry, governments and public authorities to work towards a more harmonised implementation of the EHDS for secondary use. There is now a strong community and plenty of ideas for what comes next,” says Mikael Rinnetmäki, Sitra’s project lead for VALO.

Great potential

The Nordic countries hold exceptional health data records collected over decades. National identity numbers allow data linkage across registers, and trust in public authorities and support for research are high. Pooled across countries, this data could provide stronger evidence for better diagnostics and treatments.

Authorities joined forces to implement new EU health data rules

The EHDS sets common European rules for secondary use, but much of its implementation will depend on national systems and processes. For cross-border research to work in practice, national solutions need to be compatible.

To support this, VALO convened the Nordic ministries, authorities and experts responsible for implementing the EHDS in eight Nordic competence forums on secondary use. The forums worked through practical questions, from data access and metadata to legal and ethical issues. The results have been compiled into a preliminary Nordic implementation guide.

“The forums gave ministries and authorities a trusted space to compare their choices openly. We are all facing the same questions, so no country should have to reinvent the wheel. There is great value in learning from each other and in harmonising our practices where possible”, says Michel Silvestri, senior adviser at the Swedish eHealth Agency and chair of the Nordic EHDS2 Competence Forums.

Lung cancer studies prove cross-border research is possible today

The VALO pilots tested two different ways to analyse health data across borders. Both studied the treatment of advanced lung cancer and used the OMOP Common Data Model to have each country’s data in the same format.

In the first pilot, a researcher in Norway developed analysis scripts that the participating hospitals ran locally, and only aggregated results were shared.

The second pilot used secure processing environments (SPEs) – protected digital spaces where authorised researchers can work with data but cannot download it. Health data did not cross country borders, but researchers, in Denmark, were given remote access to the OMOP-formatted data in the hospitals’ SPEs.

Together, the pilots showed that the Nordic infrastructure already allows researchers to securely analyse health data in other countries without the data leaving its national environment. They also highlighted that secure infrastructure alone is not enough to make this type of research common practice. Other requirements include approvals, researcher access, data documentation, support services and checks on results before they can be shared.

“The VALO pilots showed that cross-border access to health data is achievable today. The next challenge is making that experience transparent, repeatable and scalable so that researchers can benefit from trusted cross-border data access as a routine part of research, not just within pilot projects”, says Susanna Flaherty, healthcare director and country manager in Finlandat IQVIA, which led both pilot studies.

Nordic model would make cooperation permanent

VALO has proposed a Nordic model for organising health data cooperation on a lasting basis, presented in one of the project’s four final reports.

The model includes a Nordic health data coordination committee, a permanent secretariat, a competence forum and an annual Nordic health data summit. It builds on existing Nordic structures and cooperation developed through VALO and earlier initiatives.

“We should see the EHDS as an opportunity”, says Sigríður Haraldsd Elínardóttir, head of division of health informationat the Directorate of Health in Iceland, who steered the work on the Nordic model. “By coordinating the EHDS implementation across the region, we can meet European requirements while preserving the advantages built over decades.”

Cooperation could also extend beyond the Nordic region: Estonia and Lithuania took part in VALO’s follow-up phase as observers, laying the groundwork for closer Nordic-Baltic ties.

With first steps taken towards coordinated EHDS implementation and cross-border research tested in practice, the Nordic region is well placed to accelerate health innovation for better care and remain a frontrunner in digital health as the EHDS continues to take shape.

Read the final results of VALO