4. If you need data from other data providers apply for these separately. Inform or apply for approval from Data Protection Agencies

Researchers often wish to link data from other organisations or data they have gathered themselves to the data being applied for from the National Statistical Institutions (NSIs). The researchers need to obtain all relevant approvals from national authorities before final approval by the NSIs can be granted. The national requirements for approvals differ both in regard to the number of authorities that need to approve the project, the required documents that have to be submitted with the application as well as whether the researcher or the NSI has to submit the application.

Below is a list of approvals needed before the NSIs can accept an application for data access.

DENMARK

  • Data will be hosted by Statistic Denmark
      • All Danish data are owned by Statistics Denmark
        • Approvals from all NSIs involved
      • Both data from researcher and Statistic Denmark
        • Approval for the use of external data: The Danish Data Protection Agency (Has to be submitted by the researcher before their own data are transferred to Statistics Denmark and needs to include a project description)
        • Approvals from all NSIs involved
      • Data from other Danish agencies
        • Approvals for using external data are granted by the Danish Data Protection Agency. Please refer to the home page <www.datatilsynet.dk> of the agency for further information.
        • Applications for Danish medical data can be made directly to Statistics Denmark which has a number of the most commonly sought after medical registers.
  • Special additional requirements if Danish data are to be hosted by other Nordic NSIs
    • Approval for the use of external data: The Danish Data Protection Agency (Has to be submitted by the researcher before their own data are transferred to Statistics Denmark and needs to include a project description)
    • Approval for use of data owned by Statistics Denmark: Approval from The Danish Data Protection Agency (Has to be submitted by Statistics Denmark and needs to include a project description and security agreements)

 

FINLAND

  • Data will be hosted by Statistic Finland
    • All Finnish data are owned by Statistics Finland
        • Approval from Statistics Finland
        • Approvals from all NSIs involved
    • Both data from researcher and Statistic Finland
      • Before issuing the approval Statistics Finland makes sure that the subjects, who have given their information to the researcher, know that the information will be linked to register data (informed consent).
    • Data from other Finnish agencies
      • Approvals from all agencies for all researchers taking part in the research project. Patient data can be applied for from THL using an application form whereas prescription data should be applied for from KELA .
  • Special additional requirements if data are to be hosted by another Nordic NSI
    • A notification of the research data set should be sent to the Data Protection Agency
    • It should be clearly stated in the approvals from the other agencies that the data can be transferred to a Nordic NSI

SWEDEN

  • Data will be hosted by Statistic Sweden
    • If data from other countries are included, approval from the NSI in the respective country is needed.
    • If data from other authorities within Sweden – an approval is needed from every authority involved. For example, medical data are available at National Board of Health and Welfare (Socialstyrelsen).
    • If the application contains sensitive data, an approval from the ethical review board is needed.
    • If the researcher has his/her own survey data and wants to include these data, an informed consent from the study persons is needed.

GREENLAND

  • Data are hosted by another NSI
      • All Greenlandic data are owned by Statistics Greenland
        • Approval from the Danish Data Protection Agency (Has to be submitted by Statistics Greenland and needs to include a project description and security agreements)
        • Approvals from all NSIs involved
      • Both data from researcher and Statistic Greenland
        • Approval for the use of external data: The Danish Data Protection Agency (Has to be submitted by the researcher before their own data are transferred to Statistics Greenland and needs to include a project description)
        • Approval for use of data owned by Statistics Greenland: Approval from the Danish Data Protection Agency (Has to be submitted by Statistics Greenland and needs to include a project description and security agreements)
        • Approvals from all NSIs involved
      • Other special conditions
        • As being considered third country with respect to EU directive 95/46/EF a contract following the Commission decision C(2001) 1539 has to be agreed upon and approved by the Danish Data Protection Agency

ICELAND

  • Data are hosted by another NSI
      • All Icelandic data are owned by Statistics Iceland
        • Approval from Statistics Iceland is needed
      • Both data from researcher and Statistic Iceland
        • Until now, data from Statistics Iceland have not been used for linking with data collected by a researcher. This has not been tested, but using a remote access system should be sufficient for a permission for linking researchers’ own data with data from Statistics Iceland
      • Other special conditions
        • In the case of sensitive data, the Icelandic Data Protection agency will be notified of the research project
        • Health data are also a special condition which will require an approval from the Icelandic Directorate of Health

NORWAY

      • Norwegian research institutions

        SN cannot host Nordic research data. Hosting of the data will take place at another NSI, even when the project owner is a Norwegian institution.

      • Research institutions in Denmark, Sweden, Finland, Greenland, and Iceland

Project owners (primary institution – PI) from other Nordic countries than Norway apply for Norwegian register data to their own national statistical bureau (NSI). For Norwegian register data supplied by others than SN. e.g. health data, you must contact the register owner directly. Attach copies of all correspondence to your application to the NSI.

 To apply for data from Statistics Norway (SN), the PI must be on  SN’s list of approved research institutions. If not on the list, the institution may apply SN for approval to personvernombudet@ssb.no. Use the standard application form (in Norwegian only), and make sure you get your approval BEFORE you apply for data.

To get remote access to data from Statistics Norway (SN) as non-PI, the institution  must be on  SN’s list of approved research institutions. If not on the list, the institution may apply SN for approval to personvernombudet@ssb.no. Use the standard application form (in Norwegian only).

Write the application in the Nordic application form. In addition to copies of local confidentiality permits (where required), the application must include:

          • Exemptions from confidentiality
            for Norwegian register data supplied by others than SN. Attach application and exemption to your data Application
          • SN variable lists
            Whenever available, SN variable lists must be attached to your data application
          • The research protocol
            with the detailed design of the project must be attached to your data application