New act enables effective and secure use of health and social data

Act on the Secondary Use of Health and Social Data has been laid down. The purpose of the act is to make the use of the data smooth and more secure.

Finland has exceptionally comprehensive and high-quality data resources in the social welfare and healthcare sector. Amended legislation will facilitate their better utilisation while respecting the privacy of individuals.

The Act on the Secondary Use of Health and Social Data will make it possible to use health and social data not only in research and compilation of statistics but also in the development and innovation activities, teaching, knowledge management, supervision and steering in the social welfare and healthcare sector and in official planning tasks. 

The Act creates better preconditions for the research and innovation activities related to the health and wellbeing of citizens, the prevention of diseases and the development of new treatment methods.

“Finland is a pioneer in collecting extensive register data and now also in the secondary use of the data,” says Senior Specialist Jukka Lähesmaa.

Combining register data will be smoother and the knowledge base will expand

A data permit authority will be established for the implementation of the Act to ensure that the data is used in an ethically sustainable way. The new authority will grant the data permits for health and social data in a centralised manner when data is needed from several different keepers of registers. A centralised data permit system and secure user environments for handling the data will be built for the permit process.

“The data required for research can be obtained faster when the permit procedure becomes smoother and the researchers have access to ready-combined data,” Lähesmaa explains

The Act on the Secondary Use of Health and Social Data creates a clear legal basis for the use of register data also in innovation and development activities. Companies will be able to receive ready-combined aggregate data for these purposes more comprehensively and quickly.

The data permit authority that will be established will operate at the National Institute for Health and Welfare separate from the institute’s other activities.

The legal basis of knowledge management will be clarified

Knowledge management is one of the grounds for secondary use of data. Service providers will in future be able to use their own register data to monitor and develop the functioning and the effectiveness of the services. This will make it possible to develop a service system and more effective service entities, for example, for people who use the services a lot.

The President of the Republic has approved the Act on the Secondary Use of Social and Health Data on 26 April 2019. The Act is due to enter into force on 1 May 2019. However, some of the provisions will not be applied until after a transition period. The processing of permits at the data permit authority will begin step by step in early 2020.

Inquiries

Jukka Lähesmaa, Senior Specialist, Ministry of Social Affairs and Health, tel. +358 29 516 139, [email protected]
 

The primary use of customer data means that data is used for the situation for which it was originally saved in the customer or patient register. Such situations include examinations of patients, rehabilitation, social welfare services or the processing of Kela’s benefits.

The secondary use of customer data refers to the use of the same information in other contexts than in primary use. The secondary uses outlined in the Act include scientific research, compiling of statistics, development and innovation activities, teaching, knowledge management, steering and supervision by authorities, and the planning and reporting duties of authorities.