Register and health data

The Swedish Research Council has several mandates aimed at promoting the use of data for research. We have a specific mandate to facilitate the use of register data for research purposes, focusing on infrastructure.

The website registerforskning.se contains practical tips and advice for all who want to use register data for research purposes.

We are also developing and operating the metadata tool Register Utiliser Tool (RUT), which provides information about Swedish registers and biobank sample collections and their content at metadata level. RUT provides a quality-assured overview of register variables and their importance, code lists, value sets and history. New registers are continuously being added to RUT.

We collaborate with register-keeping public agencies and organisations on issues relating to how the conditions for using register data and health data in research can be developed, and how RUT can support the data withdrawal process. Every year, we arrange joint meeting places and conferences between researchers and data keepers, where topical issues for the field are discussed.

The Swedish Research Council has been tasked to set up an advisory function for better utilisation of health data, to support actors who wish to use health data for research and innovation.

The national support will consist of three parts:

• knowledge-enhancing support – contributing to overall knowledge about and understanding of the opportunities to use health data for research and innovation.
• coordinating support – promoting interaction and support collaboration between operations and functions that can improve the preconditions for using health data for research and innovation.
• mapping of uncertainties and obstacles – clarifying perceived uncertainties and actual obstacles in the field.

The advice function will be developed in conjunction with the Swedish Research Council’s closely related mandates and activities, in particular together with the support work in register-based research and clinical studies. The knowledge support will be accessible on a new, joint website.

The Swedish Research Council also interacts continuously with relevant public agencies and other actors.

Funding has been awarded to the six nodes in Clinical Studies Sweden to contribute to the work on the health data task. They will map regional research support linked to health data and register-based research, contribute to investigating needs and national coordination in the area, and update the website kliniskastudier.se with related information.