Access data for precision medicine research
Researchers can access human data for research from various national and international sources, such as research databases, quality registries, patient or medical records, biobanks, and more. However, human data is often not freely available. Researchers seeking access to human data must submit an application outlining their project and its requirements. The responsible institution, typically a healthcare region or university, will release the data only after conducting harm and confidentiality assessments.
It is possible to request existing data from several research projects or research databases in Sweden. Projects can be found, for example, on the website of the project’s entity responsible for the research, the Swedish National Data Service (SND), or the Precision Medicine Portal.
In the research data catalogue at SND, it is possible to search for research projects and data from several disciplines. Some data and metadata can be downloaded directly from the catalogue. SND also provides information about data management and a service for data sharing.
The Swedish quality registries aim to improve the health care system by collecting individualised health data about, for example, certain diagnoses or problems (further information in Swedish). Data from a certain registry can be requested by researchers after approval by a steering group consisting of health care professionals and patient representatives.
Healthcare providers must inform patients before their medical information is collected in a quality register. This procedure differs from the inclusion of a research subject in a study, where written consent is required. However, personal data cannot be processed in a quality register or research study if the individual objects. If a person opposes the processing of their personal data after it has begun, the information should be erased from the register as soon as possible (further information in Swedish).
Every quality registry in Sweden is connected to one of six centres that provide support:
- Stockholm (QRC STHLM)
- Syd (RC SYD)
- Norr (RCN)
- Uppsala Clinical Research Center (UCR)
- Västra Götaland
- SydOst (RCSO)
Patient and medical records
Healthcare staff document patient interactions, and after a confidentiality assessment, this information can be requested for medical research by lämna in en begäran om utlämnande av patientdata. In Sweden, the 21 regions are responsible for most healthcare services, while municipalities handle services like home care, and private practitioners manage their own records. Consequently, to conduct research using patient records from across the country, it may be necessary to request data from multiple sources.
Research data management
SciLifeLab provides general research data management (RDM) guidelines, available here, and specific information about the ethical, legal, and societal implications (ELSI) for research involving human data, available here. They also offer guidance on sharing sensitive human data.
More information and tailored research support can be found at universities, colleges, and healthcare regions or hospitals. A selection of links:
- Örebro University
- Karolinska University Hospital
- Lund University
- Umeå University
- Uppsala University
- Karolinska Universitetet
