The secondary use of the Finnish national health data repository Kanta – opportunities and obstacles

Authors

• Emmi Eronen Atostek Oy
• Alpo Olavi Värri Faculty of Medicine and Health Technology, Tampere University http://orcid.org/0000-0002-3214-3458
• Miika Järvinen Atostek Oy

DOI: https://doi.org/10.23996/fjhw.156607

Keywords:

Kanta services, laws, health informatics, health information management

Abstract

The Finnish law about the secondary use of health data has made it possible to use also the data in the Kanta national health and social welfare data repository, the Kanta Services for secondary purposes such as scientific research, innovation and development, education, statistics and information management. The Kanta Services contain also a personal health record data repository, the Kanta PHR. The large amount of health data in the Kanta Services makes it an interesting source for various secondary purposes.
This paper studies the opportunities, but also obstacles to the secondary use of Kanta data. The study focuses on two use cases, the Kanta PHR data use and the Patient Data Repository use for disease risk predictor development. The topic is studied by analysing laws, Kanta system documents, scientific literature, current discussions of the topic in public and three expert interviews. The literature search analysed for relevance all articles with keyword Kanta in the Finnish Journal of eHealth and eWelfare since year 2024 and also other scientific literature discussing Kanta Services and secondary use.
The result of the Kanta PHR use case study was that although the EU General Data Protection Regulation would allow the secondary use of the Kanta PHR data based on consent, the current Kanta Services applications do not support this at all. Disease risk predictor development is possible with Kanta patient data repository data in scientific research, but innovation and development activities face administrative difficulties because only aggregated Kanta data is allowed to use for these purposes. Information management can make use of aggregated Kanta Services data and it can be used for benchmarking the quality of a health delivery unit to other similar units in Finland.
While protecting the privacy of the individuals’ data in the Kanta Services, improvements to the secondary use law are suggested. These include the easier access to non-aggregated health data for research and development, possibilities to individuals to consent the secondary use of their Kanta PHR data and allowing the use of risk calculations for automatically inviting persons at risk to health check-ups. It is also recommended that lessons are learned from the Finnish secondary use law and the European Union European Health Data Space law allows more flexible use of health data for secondary purposes from those individuals that allow it.