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.
We are 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 is available on the website dataguide.se. External link.
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 dataguide.se. It provides information on how register and health data can be used in research.
The Swedish Research Council is one of five Swedish public agencies taking part in the EU-funded project SENASH (Sweden National Services for Access to Swedish Health Data). The project aims to create a national system for making Swedish health data accessible for secondary use – for example research – within and between EU member states. The Swedish eHealth Agency leads and coordinates the project, which also includes the Public Health Agency of Sweden, the National Board of Health and Welfare, and Statistics Sweden.
The idea behind SENASH is to make it easier to search and order health data by developing a national metadata catalogue and a system for ordering data from different actors. The project is linked to work within EU on a European Health Data Space (EHDS), and is about sharing health data efficiently and securely. A pilot study has therefore been carried out within SENASH to analyse the conditions and challenges in Sweden ahead of the EU rules on secondary use of health data that the European Health Data Space Regulation will entail. Pilot versions of the metadata catalogue and ordering system will be produced.
The project, which will run until January 2027, is partly funded by the EU4Health programme, and has an overall budget of 28 million SEK. EU4Health aims to address long-term health challenges by strengthening health and medical care systems, making them more resilient, and improving access to them.
Read more about Senash at the Swedish eHealth Agency' s website External link.
About EU4health at EU4health's website External link.
European Health Data Space at the European Commission's website 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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