Summary
The secondary use of health and welfare data means that user data created during activities in the health and social services sector will be used for purposes other than the primary reason for which they were originally stored. These data may then be used for scientific research, to gather information for the policy process through statistics, or to adjust the functioning of government.
Europe
The creation of a European Data Space is one of the Commission's priorities for the current legislature (2019-2025). It is part of two different plans of the European Commission, which on the one hand wishes to create a European Health Community, and on the other hand wishes to work on a European Data Strategy.
According to the Commission, the European Health Data Space:
- promotes the secure sharing of patient data and citizens' control over their health data
- supports research on treatments, medicines, medical resources and results
- encourages access to and use of health data for research, policy-making and regulatory purposes, with a trusted governance framework and in compliance with data protection rules
- supports digital health services
- clarifies the safety and liability of AI in health care settings
The European Commission is also working on a legislative proposal to regulate spaces for health data. This proposal is expected by the end of 2021.
Finland
Finland is therefore ahead of the European Commission and has recently put into operation a prototype health data space.
Why is Finland shifting gears so quickly?
Finland has a long tradition of collecting data in registries, but various causes such as privacy restrictions and technical requirements have made the use of the data challenging. By introducing legislation early, the country can already enjoy the benefits of this health and welfare data. Enabling secondary use of health data can benefit an entire ecosystem of organizations (e.g., start-ups, research institutions, the pharmaceutical industry). If Finland has to wait for the European regulation, it will lose valuable time while it already has the data at its disposal.
What does the law entail?
Through this law, the country intends to enable the efficient and secure processing of personal data collected during the provision of welfare and health services, as well as personal data collected for the purposes of steering, monitoring, research and the collection of statistics on the welfare and health sector.
The law will enable smoother and faster processing of data permits, easier comparison of data from different registries, easier and more efficient use of valuable welfare and health materials in research and development and knowledge management among service providers. The law will also improve data security.
Data authority
To streamline and secure the secondary use of welfare and health data, the law also provided for the creation of a new government agency, Findata. The government agency is part of the National Institute for Health and Welfare, but is separate from the other activities of the government department.
Findata provides data collection and security on the one hand, and permitting and guidance services for organizations that wish to use the data on the other hand.
