Isaacus has paved the way for the seamless use of Finnish well-being data
Better access to well-being data could speed up research and service development. The Sitra-led project Isaacus has developed several effective and secure ways of collecting and distributing well-being data from a one-stop shop. The development work will continue under the Ministry of Social Affairs and Health.
Sitra launched Isaacus – the Digital Health HUB together with its collaboration partners to pave the way for more efficient use of Finnish well-being data. The project has developed an operating model and built foundations for a single central operator, in other words, a permit service provider and operator who can combine the well-being databases within social services and healthcare more efficiently than at present.
Well-being data is vital for scientific research, drug development, service development and knowledge-based management. At the moment, utilising data from several sources is difficult, if not impossible.
“Obtaining research permits can take years, which puts back the development of new therapies and treatments significantly. Resolving this bottleneck was the motivation behind our project,” says Jaana Sinipuro, Project Director.
New tools for management, research and innovation
The operator would provide a twofold service by managing permits and data requests and the actual processing of data requests. The work of the permit service and digital health hub is designed to be authority-led. The services would be organised in collaboration with different controllers and the operator would act as the interface between different data users and producers.
Researchers and other data users would only need one point of contact, which could offer both guidance and issue research permits. Data would be processed within a secure environment and would never be distributed directly.
During the project, the operating model of the new operator, the service it offers and its potential customer base were investigated. Sitra also funded the pre-production projects of the collaboration partners, in which the elements facilitating the new one-stop-shop permit and service operator were built.
The project was run in close co-operation with the Ministry of Social Affairs and Health, which has been preparing a legislative proposal on the secure secondary use of social welfare and health data. If enacted, the legislative proposal (link in Finnish) that is currently awaiting processing by the Social Affairs and Health Committee will enable the establishment of a central operator issuing well-being data permits and providing related services.
“The new service would speed up the production of more robust social welfare and health services, as it would allow more effective knowledge-based management. It would also create completely new paths for research as well as Finnish and international development and innovation work,” Sinipuro says.
Sitra’s main partners in the Isaacus project were the Ministry of Social Affairs and Health, the Ministry of Economic Affairs and Employment, Business Finland and Kela, as well as organisations who have contributed through pre-production development: the National Institute for Health and Welfare (THL), Statistics Finland, the Hospital District of Southwest Finland (VSSHP), the Hospital District of Helsinki and Uusimaa (HUS), the National Archives, the City of Kuopio, the Institute for Molecular Medicine Finland (FIMM), the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI.fi) and the Finnish Social Science Data Archive.
The preparations for the launch of operations will continue under the Ministry of Social Affairs and Health.
The project outcomes have been compiled in a Sitra publication Huomisen hyvinvointia datasta (link in Finnish, the title in English: “Tomorrow’s well-being from data”). The publication describes the structure of the operator and the lessons learned from the project. It also contains ideas and guidelines for the next party to pick up the baton and be in charge of the permit and advisory services and the operator organisation. Future customers of the permit services, the users of the data, are also provided with a peek preview of the future data service.
Sitra’s Isaacus – the Digital Health HUB project will be completed at the end of 2018. The project’s closing event was held on 1 November 2018, the birthday of Bishop Isaacus Rothovius, the creator of Finnish parish registers and the father of Finnish statistics.