Registers in social medicine research

Authors

• Sari Räisänen Laurea-ammattikorkeakoulu
• Katariina Laine Norwegian Research Centre for Women's Health, Oslo University Hospital
• Eeva Liikanen Tampereen ammattikorkeakoulu
• Mika Gissler Terveyden ja hyvinvoinnin laitos, Turun yliopisto, Karoliininen instituutti

DOI:

https://doi.org/10.23990/sa.148483

Keywords:

register data, register study, data privacy, secondary use

Abstract

In Finland, comprehensive personal data has been collected in national data registers for over 70 years. The Finnish Institute for Health and Welfare, the Social Insurance Institution, Statistics Finland, and several other organizations define the basis and implementation of personal data processing in accordance with the responsibilities of the data controller. Personal data can be utilised secondarily after their primary purpose, for example, in scientific research, innovation activities, and data-driven management. Personal data stored in different registers can be combined based on a personal identification number or another unique identifier. The secondary use of personal data is regulated by the Act on the Secondary Use of Health and Social Data (552/2019), and Findata, as the data permit authority, grants data permits.

The greatest strengths of the secondary use of register data are the ability to access data for the entire population over a certain period, which is impossible with self-collected data. The biggest weaknesses relate to the quality of the data, as register data are not perfect due to erroneous and missing information. Register data are often used in observational studies, such as cohort or case-control studies, and longitudinal studies, as it is possible to follow an individual over time. Compared to randomised controlled trials, the biggest challenge in observational studies is that exposure cannot necessarily be determined accurately.

In the European Union (EU), the General Data Protection Regulation (2016/679), which came into force in 2018, regulates the processing of personal data in the EU. In Finland, privacy protection has been supplemented by the national Data Protection Act (2018/1050) and the Act on Secondary Use of Health and Social Data. National regulations have been criticised for hindering scientific research, as, for example, data are not concretely provided to researchers. This prevents, for example, Nordic joint research. In many cases, only meta-analyses are feasible in international collaboration. The costs associated with data permits and the handling of data for register study have also risen sharply.