The flexible use of well-being data provides high-quality research, treatment and care. We are developing a way to collect and distribute well-being data from a one-stop shop. #isaacus
A new act will increase the transparency and impact of using social welfare and healthcare data
International review, Secondary use of health and social care data and applicable legislation
WHAT IS IT ABOUT?
Sitra is preparing a new, one-stop-shop operator that will collect and co-ordinate well-being data. The working title of this operator is Isaacus – the Digital Health HUB.
In Finland, the well-being data collected on an individual, such as patient records and lifestyle information, or data gathered by a health bracelet is scattered in different systems and is difficult to use for anything. Different registers often contain overlapping data. At the moment, the data is only used to solve an acute problem or ailment.
These data reserves, which are unique even by international standards, should be harnessed for wider use. This way it would be possible to provide a better quality of social welfare services and healthcare and generate important opportunities for business, research and new growth. In addition, an attractive research and development environment for the health and well-being industry could spring up in Finland.
The right of individuals to own and control the data concerning them should be taken into account when the data is used. The exchange of information between different operators should be promoted and their access to systematically organised data enhanced when the parties involved need it and have the right to access it.
What do we do?
Sitra’s projects are aimed at preparing an operator that provides well-being data and open data from different information sources and registers on a one-stop-shop basis. The permit and guidance services for the users of this data will be made available in one place. When data is processed, special attention is paid to privacy protection, data security and the right of individuals to decide who the information concerning them is used by and for what.
Individuals can view their own information and use it to help maintain their well-being. The services available to them will be based on better information.
We co-operate extensively with the public and private sector and various organisations. These include the Ministry of Social Affairs and Health, the Ministry of Economic Affairs and Employment, the National Institute for Health and Welfare (THL), the Association of Finnish Local and Regional Authorities, Statistics Finland, CSC – IT Center for Science, the National Archives of Finland, the Hospital District of Helsinki and Uusimaa (HUS), the Hospital District of Southwest Finland and the City of Kuopio. Some of our partners implement concrete pre-production projects.
Where are we now?
Our work began in September 2015 and will end in July 2018. We have gathered leading experts from the public, private and third sectors in our workshops to outline the architecture and operation of the future operator.
Parts of the future digital health hub and permit services are being built in the pre-production projects that have already been launched.
The Ministry of Social Affairs and Health is currently preparing legislation related to secondary use of social welfare and healthcare data. According to the draft law, the National Institute for Health and Welfare will be the body authorising the permits.
In addition to the projects and workshops, we are preparing a plan of action for the future operator to enable the launch of its operations in 2019.
The closing event of Sitra’s project took place on 1 November 2018.