Applying for access to information for research purposes

Information generated by the Social Insurance Institution as part of the benefit administration process may be used for research purposes, subject to the provisions of such Acts of Parliament as the Personal Data Act (523/1999) and the Act on the Openness of Government Activities (621/1999).

Information is released only for studies that meet the criteria for scientific research and comply with the conditions laid down in the abovementioned Acts. The study may not disclose information concerning individual persons. The information gathered in the course of the study must never be used for decisions concerning individuals.

Information is made available for research use only by permission of the Social Insurance Institution, which may be requested with an online application form. Applications must in all cases be accompanied by an up-to-date research plan, a specification document, a description of the scientific research data file, a publication plan, confidentiality agreements and invoicing details. Depending on the type of project, applications may also have to include copies of permits from other organisations, statements by research ethics committees, and copies of the informed consent form and cover letter. The application and supporting documents are emailed to the Social Insurance Institution at tietopyynnot (at) kela.fi. The supporting documents must be titled and numbered clearly to speed up the processing of the application.

Which details must the application provide?

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

A confidentiality agreement must be signed by the principal researcher and by the researchers named in section 1d of the description of the scientific research data file as well as by persons who come into contact with 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. 

If the purpose is to combine register data with information gathered directly from the research 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 the Social Insurance Institution will be combined with such information. These consent documents must be included with the application. Advance planning is important to ensure that comprehensive consent is obtained for the entire research project.

The following information must be available to the study subjects from the consent documents:

  • Who will process the data? (register authority for the study)
  • What kind of data are collected? (types of data collected on study subjects)
  • Are data collected from other sources as well; from what source, what kind of data, and what is the basis of the data collection? (other registers)
  • For what purpose? (individualised study)
  • Will data be made available outside the research team? (what kind of data, to whom and for what purpose)
  • Duration of the study (for how long will the collected data be processed)
  • How will the register used in the research be dealt with after the research?
  • Rights of the study subjects

Processing of the application and the resulting costs

The application will take at least 2-3 months to process. The time required depends on the clarity and accuracy of the information and statements submitted. The process can be expedited by ensuring that the application form is completed carefully and that it is accompanied by all necessary supporting documents. Having to contact the applicant for further information will delay the processing of the application. The information requested should be identified in as much detail as possible to allow an accurate estimate of the costs. The application should be submitted well in advance of the start of the research.

The application is processed by the Social Insurance Institution’s Administration and Facility Management Unit, which also obtains the necessary consultations and produces a cost estimate.

Fee schedule for research data permits:

  • New permit or permit covering a large dataset: €300
  • As above except if related to a thesis: €150
  • Extension of a permit: €100.

Value-added tax is added to the fees. The same fees apply whether a permit is granted or denied.

Because access to information for research purposes 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 ICT-related work required to retrieve the requested data (rate as of 2016/2017: €83/€78 per hour + VAT).

The data are made available free of charge to government authorities which have a right specified in law to obtain such data free of charge (applicable to applications which arrive on or after 1 January 2017).

While the Social Insurance Institution may make a decision on granting permission before other involved organisations have finalised a decision, any information will not be released until all required permissions have been obtained and copies of them have been submitted to the Social Insurance Institution.

Permission granted by the Social Insurance Institution is valid for 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, and
  4. an up-to-date description of the scientific research data file

Permission must be obtained from the Social Insurance Institution 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, and
  3. an up-to-date description of the scientific research 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, and
  3. an up-to-date description of the scientific research data file
  4. specification document

Requests for data received from government authorities: Data are made available free of charge to government authorities which have a right specified in law to obtain such data free of charge. The requester must specify, by reference to the law in question, why the data should be made available free of charge.

Following a favourable decision, the Social Insurance Institution's ICT unit for administration and statistics will retrieve the requested data. The retrieval schedule depends on the quantity and volume of internal and external applications for information access submitted to the ICT unit for administration and statistics. After retrieval, the Social Insurance Institution keeps the information related to the study on file for three (3) months, unless otherwise separately agreed on with the researcher.

The Social Insurance Institution is responsible for ensuring that the data comply with the specification document drawn up on the basis of the data request. The Social Insurance Institution 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 the Social Insurance Institution or other sources for the research in question. The Social Insurance Institution assumes no responsibility for any errors in the source data. The Social Insurance Institution assumes no responsibility for errors or delays caused by the requester's failure to discharge agreed responsibilities.

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

The Social Insurance Institution assumes no responsibility for errors, delays or indirect damage caused by a force majeure event. The Social Insurance Institution'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 the Social Insurance Institution due to wilful or gross negligence.

Following the end of the research, the Social Insurance Institution must be notified of the destruction or archival of data released by the Institution.

The address for submitting an application for information access, a notification of the destruction or archival of personal data  is tietopyynnot (at) kela.fi. Additional information is available from Jarmo Partanen (tel. 020 634 1364). The email address is of the format firstname.lastname@kela.fi.

Statistical registers of the Social Insurance Institution

Please see the following link for information on register data commonly used for research purposes: Register data

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

Other resources on the internet

Guidelines released by the Office of the Data Protection Ombudsman

Last modified 24/03/2017
Updated 22/10/2012