Status of Health Sector Registers and Data Provision in Finland

Abstract

As the super-aging society at Japan will increase medical expenses, we are focusing on studies using Real World Data, which is expected to have high external validity, to derive the evidence that can contribute to healthcare policy. Under Act on Anonymized Medical Data That Are Meant to Contribute to Research and Development in the Medical Field, the first Certified Producers of Anonymized Medical Data was just certified at the end of 2019 and the stakeholders are currently exploring methodologies for the secure management of personal information, anonymization methods, and data provision. On the other hand, Finland has already established the system for the systematic collection of comprehensive and thorough medical information with the Personal Identification Number from medical institutions across the country with the opt-out policy. The collected medical information is registered in the respective registers according to the respective rationale law. In addition, anonymized data are provided for secondary uses such as research. These activities are precisely the role that the certified producer is trying to fulfill. It is useful to know the current situation in this country in order to consider the direction of the future policy on the secondary use of medical information in Japan. Based on the interview and literature review, we introduce the Finnish health care register, institutional environment, and guidelines for anonymized processing of health care information, and present recent trends.