Use of Kela register data for research purposes

Starting 1 April 2020, research permit applications and data requests for secondary use which involve combining data from several data controllers are reviewed by the Data Permit Authority Findata. This means that Findata also reviews applications for research access to the registers and documents of the Social Insurance Institution of Finland (Kela) which involve data obtained from two or more of the data controllers referred to in the Act on the Secondary Use of Health and Social Data (552/2019). More information is available on the Findata website at www.findata.fi/en/services.

Starting 1 April 2020, research permit applications and data requests should be directed to Kela only if they exclusively concern data available in the Kela registers. For more information, please email tietoaineistot(at)kela.fi or call +358 50 476 2974.

Findata can grant a research permit under the following conditions:

  • if the application concerns data available from several data controllers
  • if the data will be obtained from private providers of social and health services, or
  • if the application concerns data stored in the Kanta Services. For the Kanta Services, Findata will be the point of contact starting from the beginning of 2021.

Applications for research permits must be directed to Findata.

  • Email: info(at)findata.fi
  • Telephone: 029 524 6500

The Acts of Parliament that have relevance to the use of data created in the course of Kela’s benefit operations include the following:

Research involving the use of register data available from Kela

The use of the register data available from Kela requires Kela’s permission, which may be requested with an online application form. All applications must include the following documents:

  1. Online application form
  2. Up-to-date research plan / Document outlining how the data are to be used
  3. Specification document for the data request
  4. Privacy statement (either an internal statement of the applicant organisation or the National Institute for Health and Welfare form linked below
  5. Publication plan
  6. Confidentiality agreement signed by all who will have access to the data
  7. Invoicing details

A statement by a research ethics committee should be provided where appropriate.

The application and supporting documents are emailed to the Social Insurance Institution at kirjaamo(at)kela.fi. The supporting documents must be titled and numbered clearly to speed up the processing of the application.

What information must be provided in the application?

  • the principal research institute and investigator as well as other persons who will have access to the data
  • where the study is to be carried out, how the confidentiality of the data is ensured and how the data are to be destroyed
  • Research schedule
  • sources of financing for the research and any ties or conflicts of interest of the research team
  • the type of data requested from Kela and the period for which it is requested
  • the purpose for which the data are to be used
  • other information used in the research.

A confidentiality agreement must be signed by the principal investigator and by researchers who handle encoded or pseudonymised data. The research data is considered to constitute a register of personal data as long as it remains possible to recognise individuals from the data either directly or indirectly or as long as the code key for the data is retained.

Interview and questionnaire surveys

If the purpose is to use register data available from the Social Insurance Institution in combination with information gathered directly from the subjects (by means of interviews or surveys), either the consent form signed by the subjects or the information notice must state clearly what types of data (e.g., data on purchases of prescription medicines) obtained from Kela will be combined with such information. A model consent form and information notice must be enclosed with the application. The consent form must be drawn up in compliance with GDPR provisions. Advance planning is important to ensure that comprehensive consent is obtained for the entire research project.

Processing of the application and the resulting costs

The time required to review the application depends on the clarity and accuracy of the information and statements submitted. The process can be expedited by ensuring that all application documents are completed carefully and are accompanied by all necessary supporting documents.

Applicants are notified of the outcome of the review as soon as possible and in any event within three months of the date on which the full application was received by Kela.

Having to contact the applicant for further information will delay the processing of the application. The data requested should be identified in as much detail as possible to allow an accurate estimate of the costs of retrieving the data / carrying out the request. Applications should be submitted well in advance of the start of the research.

Fee schedule for research data permits as of 1 May 2020:

  • New permit or permit covering a large dataset: €1,000
  • As above except if related to a thesis: €150
  • Extension of permit or addition of new members to the research team: €300.

The prices are exclusive of and exempt from VAT.

Because the provision of data and statistics is subject to a fee under the Act on Criteria for Charges Payable to the State, the applicant is provided with an estimate of the cost of the work required to retrieve the requested data (rate as of 2020: €119 per hour).

Validity and renewal of the permit

Data permits granted by Kela are valid for a specified period of time (up to 5 years from the date of the letter of permit). For purposes of extending a permit, the applicant is required to submit an application accompanied by at least the following documents:

  1. copies of any prior permits obtained
  2. details of the individual stages and publications of the research project and an estimate on the fulfilment of the terms and conditions of the permit and on the completion of the remaining part of the study
  3. a list of participating investigators and persons who process confidential research materials
  4. an up-to-date privacy statement
  5. invoicing details

New members of the research team

Permission must be obtained from Kela to add a new investigator to the research team. Information about the investigator’s ties and conflicts of interest must be stated in the application. The application must be accompanied by:

  1. copies of any prior permits obtained
  2. a confidentiality agreement
  3. an up-to-date privacy statement.

Expansion of the data file

It is possible to apply for an expansion of the data file in order to add contents or topics not covered by the original permit. The application must describe the new data to be added. The application must be accompanied by:

  1. copies of any prior permits obtained
  2. an updated research plan
  3. an up-to-date privacy statement
  4. a specification document
  5. invoicing details

Retrieval of the requested data

Following a favourable decision, Kela will retrieve the requested data. The retrieval schedule depends on the number and extent of currently pending requests. After retrieval, Kela keeps the data related to the study on file for one year, unless otherwise separately agreed on with the researcher.

Kela is responsible for ensuring that the data comply with the specification document drawn up on the basis of the data request. Kela will correct any error discovered in the data free of charge provided that the requester informs it of the error in writing within 3 months of when the entire set of data was made available to the requester, including any data supplied by Kela or other sources for the research in question. Kela assumes no responsibility for any errors in the source data. Kela assumes no responsibility for errors or delays caused by the requester's failure to discharge agreed responsibilities.

Kela has the right to outsource tasks specified in the request to third parties. Kela assumes responsibility for all such tasks as if they were sourced internally. Kela will not release data if doing so would infringe upon confidentiality provisions governing such data or would be otherwise unlawful.

Kela assumes no responsibility for errors, delays or indirect damage caused by a force majeure event. Kela's liability for damages does not extend beyond the agreed price for the service that resulted in the damage. However, the limitation of liability does not apply in case of any damage caused by Kela due to wilful or gross negligence.

Kela’s registers

Links to Kela register data commonly used for research purposes are available in Aineistokatalogi.

On the use of the statistical data collected by Kela, see www.kela.fi/statistics.

Other resources on the internet