A new act will increase the transparency and impact of using social welfare and healthcare data
Research and innovation will soon get an additional boost from new legislation and a new licensing authority that will allow social welfare and healthcare data to be used more smoothly and securely.
The new licensing authority will accelerate the processing of research permits related to Finland’s unique social welfare and healthcare data repositories and the access to this data. Data security will also improve. The data will help in developing better services and medication and in finding new tools for knowledge-based management, among other things.
The operations of the licensing authority are guided by the Act on the Secondary Use of Health and Social Data (Government proposal HE 159/2017) that has just been passed in the Finnish Parliament and is scheduled to enter into force on 1 May 2019.
Pursuant to the new act, social welfare and healthcare data from different registers can be used in statistics, research, teaching, knowledge-based management, control by authorities and development and innovation projects.
“Researchers’ and service developers’ work will become considerably more effective when the permit process is based on the ‘one-stop-shop’ principle and data from several sources can be used more smoothly,” says Antti Kivelä, Director at Sitra.
The level of data security will rise significantly. In the future, social welfare and healthcare data will be processed in a closed, data-secure and access-monitored environment.
“The data-use permit grants access only to the data needed for the purpose in question and ensures it is provided in a pseudonymised, anonymised or statistical format. This secures the individual’s privacy better than before,” says Hannu Hämäläinen, Senior Advisor at Sitra.
The work on a new licensing authority began at Sitra in 2015
The establishment of the licensing authority is the outcome of long-term co-operation. In addition to the drafting of the bill by the Ministry of Social Affairs Health, many parties, including the future licensing authority the National Institute for Health and Welfare (THL), have participated in Sitra’s project work.
“The projects led by Sitra built elements for starting the licensing authority’s operations. We looked into how the new operator should be organised, what kinds of needs future customers may have and what patients think about the use of health data. Hospital districts built data lakes intended for data processing,” says Kivelä, listing some examples of the project content.
The extensive co-operation carried out alongside the drafting of the bill will significantly speed up the launch of the licensing authority’s operations. In addition, the state’s supplementary budget has proposed allocating 2.5 million euros for the year 2019 towards launching the operations of the licensing authority and the construction of a data-secure environment.
Sitra’s work has been completed and the lessons learned by all the parties involved can now be used to launch the actual operations. The vision and the building blocks for the future licensing service, as well as recommendations, are documented in the Huomisen hyvinvointia datasta report (in Finnish), published on 1 November 2018.
Edit 26 April 2019: Updated the date of the Act entering into force on 1 May 2019 (former version 1 April 2019).