Find and collect data

Register data

Sweden is internationally known for long time series and high quality in a wide range of national registers, where in particular the health data registers held by Socialstyrelsen and population registers with socio‑economic variables held by Statistiska centralbyrån (SCB) are frequently used by researchers at KI.
There are also more than one hundred disease‑specific quality registries, with data that are important for healthcare and healthcare outcomes.

Through personal identity numbers, data can be linked from different registers, or with project‑specific research data. Research using register data requires approved ethical review and permission from the authority or organisation that owns the source data. The major register holders have well‑structured, but often slow, processes for reviewing a data request. Direct access to registers is not permitted; instead, a copy of the data is released to the research principal (KI) after approval, and KI thereby becomes the controller of personal data going forward.

More information about the data request process can be found on each individual register holder’s website and on the Swedish Research Council’s website Dataguiden.se. 

Biobanks

In Swedish biobanks, biological samples and test results from both routine healthcare and research projects are collected with the aim that they can be used for further research in the future.

Information about different biobanks can be found on Biobank Sweden’s website, with a search function intended to show the number of available samples for different criteria.

More information about the process for storing samples in biobanks, or for requesting access to data from them for other research projects, is also available on Biobank Sweden’s website and on the Swedish Research Council’s website Dataguiden.se.

Healthcare data

Patient data from medical records and healthcare administrative systems are covered by strict confidentiality, but it is possible to request selected information for specific, ethically approved research projects. For directly identifiable data, individual informed consent is usually required. However, pseudonymised (indirectly identifiable) extracts of delimited data are often possible for research purposes without individuals providing consent.

Direct access to medical records is generally not permitted; instead, after a confidentiality review and approval, a copy of the data is released to the research principal (KI) who thereby becomes the controller of the data.

For researchers who are also clinically active, it is important to distinguish between their roles as healthcare providers and as researchers, where certain handling of patient data may be permitted in one role but illegal in the other, regardless of whether the researcher technically has access to that data in their other role.

Confidentiality review by each healthcare provider

Research using healthcare data is complicated by the fact that a confidentiality review must be carried out separately by each data owner, which for medical records often means each individual hospital. A data request must therefore be directed to each affected healthcare provider, although several regions have coordinated the process so that a single application may suffice to contact all healthcare providers owned by that region.

Region Stockholm offers researchers a secure, standardised process for the release of health data from healthcare providers within Region Stockholm. They only handle applications that concern multiple datasets from more than one healthcare provider and cannot process cases involving private healthcare providers.

Larger healthcare providers have their own websites with instructions for data requests, if data from only that provider is relevant.

Regional data warehouses

All regions have their own data warehouses for healthcare analysis, which contain a selection of information from medical records that often resembles the national health data registers but covers more types of care, such as primary care.

It is possible to request data from these registers for research purposes, and in Region Stockholm such applications are directed to the Centre for Health Data. More information about how to request regional health data is available at Kliniska Studier Sverige and on the Swedish Research Council’s website Dataguiden.se.

Data from previous research projects

It is often possible to re‑use data collected for a specific research project in other projects, provided that the new research has ethical approval and that the handling of personal data otherwise complies with applicable legislation.

When transferring personal data between KI and another organisation, data agreements are required. More information about data agreements and the contract process can be found on the staff portal page Process for drawing up agreements for the transfer of personal data | Staff Portal.

Research data catalogues

There are several databases where you can describe your research data to make it searchable for other researchers, with instructions on which permits are required and how the process for requesting access to the data works if needed.

Researchdata.se is a national web portal where you can find, share, and re‑use research data from multiple subject areas. It also contains practical information about professional data management in accordance with the FAIR principles, as well as services and training resources from the Swedish National Data Service (SND) and other national and international actors.

In the SciLifeLab Precision Medicine Portal you can browse various quality registers, Swedish research projects, and other data sources that you can use in your research.

In the Swedish Pathogens Portal you can find information about available datasets, resources, tools, and services related to pandemic preparedness in Sweden.

In the SciLifeLab Data Platform you can find a list of data sources available for data‑driven life science in Sweden.

There are also so‑called “repositories”, where entire datasets can be made available, sometimes including sensitive personal data, such as the European Genome‑Phenome Archive, discipline‑specific repositories, and general repositories such as Zenodo and Figshare.

Re3data is a registry of databases that maps research data platforms worldwide. It lists general, subject‑specific, and institutional research data platforms.

For some external databases/repositories, access questions and requests must go via the KI Compliance and Data Office, since database providers require KI to vouch for its researchers.