Our role in register data and health data for research
The Swedish Research Council has been tasked to improve accessibility to and facilitate the use of register data for research purposes, and to assist researchers with information about registers and the relevant legislation. The Swedish Research Council has also been tasked to set up an advisory function for better utilisation of health data for research and innovation.
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, through:
- knowledge-enhancing support aimed at contributing to an overall understanding and knowledge of the potential for utilising health data for research and innovation.
- coordinating support aimed at promoting collaboration and facilitating cooperation between organisations and functions that can improve the conditions for the utilisation of health data for research and innovation.
- mapping of uncertainties and 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.
The six nodes within Clinical Studies Sweden contribute to the work of the health data assignment. This includes mapping regional research support, contributing to needs assessment, and participating in national coordination.
Using register and health data
The Swedish Research Council operates the website registerforskning.se. This has information on how register and health data can be used in research. The website also has a link to RUT, a metadata tool that makes it easier to conduct searches in registers and understanding what the variables in the registers mean.
Work is underway to develop a new website, with support for those who want to utilize registry data and health data for research and innovation. Existing content on the current registerforskning.se will be integrated into the new website
Information in Swedish about the new website can be found on registerforskning.se
External link.
Publications
The Swedish Research Council’s publications and positions on register-based research and health data. The publications are written in Swedish, but there is a English summary attached.
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