Register data include mainly confidential information. It is, however, possible to obtain register data for scientific research. In order to obtain register data for research purposes, an authorisation from the register controller is needed. Consent from the research subject is, however, needed if register data will be linked with data or samples collected directly from the subject.
It is good to clarify already in the planning stages if the data needed can be obtained including identifiers. Only data from some registers can be passed on with personal identification numbers (PINs) still present.
When you know what register data is needed in your research, and when you have written down the usage of these register data in your research plan, you can proceed to apply for access to the register data. Permission is usually obtained from the authority that controls the register. If permission is required from several authorities that are under the same ministry, the ministry authorises the access. More specific information on applying for permission and about possible applications forms can be obtained directly from the register controller.
You can also find application forms to some of the major register controllers through the links that ReTki has gathered on the following page. Most authorities do not, however, have application forms and guidelines in English on how to apply for access to data. We have prepared a short guide on how to apply for a permit to use the registers of the Social Insurance Institution. As an example of an application process, we show an application for permission to use registers that are controlled by authorities under the Ministry of Social Affairs and Health. From the page ‘Research ethics and data protection’ you will find links to document discussing these topics. From the page on Legislation you will find links to the most relevant legislation with regard to register-based research.
Chapter 4 ‘ Applying for permissions to use register data for research’ in the REDD project’s publication How to carry out register-based health services research in Finland? (pdf) contains good information on how and where to apply for permission.