Vision for a Nordic Health Data Commons

By Hakon Heimer

1 January 2020. Health data from individual Nordic countries can be securely shared or combined across borders to benefit research and clinical care in the region, according to a landmark report from NordForsk, published on 11 December 2019. 

A vision of a Nordic secure digital infrastructure for health data: The Nordic Commons,” is the product of a comprehensive two-year effort, commissioned under the Norwegian Presidency of the Nordic Council of Ministers in 2017, to determine how such data-sharing can benefit health and innovation. 

“These data sources have been referred to as a unique gold mine not available elsewhere in the world. However, there is a risk that this valuable resource will be lost unless it is made more easily accessible,” writes NordForsk director Arne Flåøyen in his preface.

In an email interview, Juni Palmgren of the Karolinska Institute, who chaired the committee that guided the project, described the report as “a coherent framework for data documentation (deep metadata) and cross-border access (secure cloud solution) to Nordic health data coupled with broader recommendations on governance and funding to realise the vision.”

Juni Palmgren
       Juni Palmgren

Among the detailed recommendations on next steps, the most important is the creation and funding of a high-level policy board that is empowered to develop the concept further: engaging other necessary actors to align legislation, coordinating funding strategies, and developing proof-of-concept projects.

The benefits of the project extend beyond the report.

“Importantly, a Nordic metadata expert group which is able and willing to push for Nordic compatible metadata has been identified through this work,” said Palmgren. “Similarly a Nordic Health Cloud group is able and willing to formulate a detailed design plan for the cloud access technology.”

The third element of creating such resources--the legal and ethical frameworks--is the least developed, and the report recommends this be an important early focus of the policy board.

The report has now been presented to the Nordic Council of Ministers, a body that has the scope and influence to take the next steps, both in terms of activities at the regional level and the equally important task of getting each country’s policymakers to build support at home.

“To implement the vision, the Nordic political level as well as Nordic and national funders of research and research infrastructure need to be mobilised,” said Palmgren.

According to Maria Nilsson, who coordinated the project at Nordforsk, “It is important to have coordinated efforts with long-term funding for both research and digital infrastructures at the Nordic level.”

In an email, Nilsson noted that the work to create a Nordic Commons does not require entirely new mechanisms at the Nordic political levels, since there are existing platforms that can be utilized, such as the Nordic Programme on Health and Welfare and the NeIC network. These are both funded through NordForsk, which in turn is under the aegis of the Nordic Council of Ministers.