The Nordic region can lead the way in utilising health data

The Nordic region can lead the way in utilising health data

19.12.2019
By increased accessibility to its health data, the Nordic region has the potential to be world-leading in research, health care and innovation. A new NordForsk report outlines an action plan towards implementing a Nordic secure digital infrastructure for health data - the Nordic Commons. The report is the outcome of two-year effort aiming to propose ways to increase Nordic cooperation on health data.

Each of the Nordic countries has high-quality data on its citizens mostly collected for purposes other than research, such as for population statistics or quality assessment and development of the health care systems. These data form a unique asset when it comes to health data research and innovation.

For several years, NordForsk has worked to highlight the potential inherent in the utilisation of longitudinal register and biobank data across Nordic borders. “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,” says Arne Flåøyen, Director of NordForsk.

With its combined population of 27 million and high-quality register- and health data collections, the Nordics has a competitive advantage. “These data collections are currently not being utilised to their full potential in research, health care and innovation. It is time to make more out of this,” says Maria Nilsson, Special Adviser at NordForsk. “In order to increase the accessibility to these data infrastructures, open metadata of high quality is central. We also need to develop technical solutions that allow analyses of Nordic data in a secure setting”, she continues. “The existing national health data initiatives will lay the foundation for the Nordic health data Commons but there is a need to take concrete measures to develop the Nordic cooperation model.“

In order to position the Nordic region firmly in the forefront of research and innovation, it is necessary to enhance data quality, increase the reproducibility of research results and to provide a basis for open science, the report concludes. The report also includes suggestions for policy implications with specific recommendations directed towards the key actors required to implement a Nordic Commons, e.g. the Nordic policy level, research and innovation funders, and data owners. Careful, coordinated and concrete actions are called for by all these actors to realise the Nordic commons.

 

WHAT IS A DATA COMMONS?

A shared virtual space where scientists can work with digital research objects. This is a system that will allow investigators to find, manage, share use and re-use data, software, metadata and workflows.  

 

Read the full report here.

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