The New Act Kicks In!

Guest blog post by Antti Tuomi-Nikula, THL

In Finland, the use of micro level health and welfare data for scientific research has been possible for a long time, and it is even possible to link records by personal ID. But practically the situation has been tricky: the data has been scattered in numerous institutions, behind different administrative systems and approval processes. Getting data from one register – with a sound and approved research plan – has been quite quick, but scraping data together from different sources has sometimes taken more than a year. In addition to that sort of delay being frustrating, in scientific research it can even be a show stopper, as grants run out and research questions get out of date. That’s what it used to be, but times are now changing. Thanks to updates in legislation, and the implementation of a new agent.

In April 2019, The Act on the Secondary Use of Health and Social Data was approved by the President of Finland. The secondary use of health and social data means that the customer and register data created during health and social service sector activities will be used for purposes other than the primary reason for which they were originally saved. Up until this year, the secondary uses allowed were quite limited, but the new act – enforced based on the GDPR but still unique – increased their number remarkably. The secondary uses referred to in the Act include:

  • scientific research
  • statistics
  • development and innovation activities
  • steering and supervision of authorities
  • planning and reporting duties by authorities
  • teaching
  • knowledge management

Especially the possibility to utilize data for development and innovation activities opens countless new options since it allows for utilization of Real World Evidence (RWE) data on a totally new level. One example of such is the possibility for public authorities and private companies to cooperate in a win-win setting: while companies can buy analytics services to find out e.g. adverse effects of drugs, public authorities profit in gradual validation of their data sources, and increased knowledge of various phenomena.

Implementation of the new act was of course the key, but it is not enough to alone improve the data access practices. For that purpose, a new data permit authority Findata is currently being set up. It will be a one-stop shop for the secondary use of social and health data, and from 2020, Findata will grant permits for the secondary use of health and social data in cases where the data of several data owners are linked. In future Findata will also grant data permits to data saved in the Kanta services, and private social and health service providers’ register data. Findata will operate in THL’s premises as a separate authority, and its duties were also defined in the new act.

In addition to data tables customized according to the customer’s needs, the Findata service will in time provide also ready-made data tables, such as content descriptions of Finnish national registers. The MIDAS Finnish pilot data tables could be also included there – being part of a catalogue of a large data supplier would increase their value as they would gain more visibility, and furthermore attention and use. That, and the earlier example of the advantages of RWE, effectively make the slogan “Data is the new oil” outright obsolete. Oil only runs out and speeds up climate change as it is being used, but the more data you use, the more it is refined and multiplied, for the profit of everyone in the long run.

Further reading