Finland has a long history of collecting extensive data in registers but making use of the data has been complicated and inefficient, due to several causes, including the privacy restrictions and the supporting technologies. In 2019 a new Act on Secondary Use of Health and Social Data (hereinafter "Act" or "new Act") entered in force in Finland. With the new enabling legislation, Finland has become the first country in the world to successfully enact a law on the secondary use of well-being data that meets the requirements of the European General Data Protection Regulation (GDPR).
The new legislation enables and expands the use of social and healthcare data from the traditional areas of scientific research and statistics to those of management/control of social welfare and healthcare, development and innovations, knowledge management, high-level education, authorities' planning and forecasting tasks, and steering and supervision of work. The new Act facilitates the establishment of a new one-stop-shop operator and central data permit authority in Finland, known as Findata, that collects and co-ordinate well-being data on the Finnish population for use in several areas.
Findata is responsible for streamlining and securing the secondary use of social and health data. It guarantees a flourishing ecosystem (both organisational and technological) around the secondary use of social and health data, streamlining the processes for the issuing of research permits and data collection and ensuring that data are being used in secure environments, thereby maintaining the trust that the general public have in authorities and the public sector.
Findata’s delivery model
Findata provides well-being data from different information sources and registers on a one-stop-shop basis. The permit and guidance services for the users of this data were made available in one place. When data is processed, special attention must be paid to privacy protection, data security, and the right of individuals to decide who the information concerning them is used by and for what.
There are two different levels of data provided by the system, and different ways to access the related datasets: individual level data, which can be used for scientific researches, statistics, education, authorities' steering, supervision, planning and forecasting. This data is available in a remote access environment for a set period. The data has been anonymised or pseudonymised. A data utilisation plan is required for access to data sets; statistical level data, which can be used for the aforementioned purposes and, in addition, for development and innovation and knowledge management. This kind of data is directly delivered to customers.
Findata provides and will provide soon the following main services supported by related technologies/systems: help desk for data users; application for permits and data requests, including ethical evaluation for anonymised statistical data; data service, collecting relevant data from different registers, and editing, combining and anonymising them before distributing it to the user; secure remote use environment.
From a technological perspective, one of the main benefits of Findata ecosystem is related to its capability to enable effective, secure and safe processing and access to data. Thanks to its technological architecture and overall governance processes, retrieving combined health and social data from different sources is easier and faster and possible with just one permit application, removing the need to approach each authority and data source separately. Indeed, in the past, these processes were very time-consuming.
Another benefit regards the data protection that is constantly increasing. Using Findata, personal data are not delivered to a personal computer or removable media, but they can only be accessed in the remote access system, where they can be used in a controlled and secure way.