High-quality data does not come easily – it requires lots of hard work and co-operation.
The flexible and unimpeded use of well-being data forms the basis of high-quality research, care and treatment.
Information on individuals is currently gathered into multiple national and local systems in Finland. This scattered data, and any data systematised from it, is used for its original purpose only – to solve acute problems and ailments affecting individuals. In addition, the individual’s role as a generator, user and proactive manager of data is being transformed. More people are beginning to understand the value of the data gathered on them. New data is continuously generated by our own activities (e.g. on our well-being and physical activity levels) in addition to that gathered by social and healthcare services.
The wider use of this valuable data, which is spread between systems, would benefit individuals, healthcare, the nursing and care sector, research and business activities. Huge potential exists for the more versatile use of our extensive data reserves to provide higher-quality social and healthcare and other services.
We should make wider use of these internationally unique data reserves, allowing the related individuals themselves to “own” and control such data. Data from various sources should be made easily available on a one-stop-shop basis. Exchanging information between individuals and various operators, and access to systematised data, should be streamlined when those involved have a need and the right to do so. Another benefit would be the avoidance of overlapping data in multiple locations.
This new approach would provide major opportunities for business, research and new growth. It would also make the further processing of data – and the subsequent generation of products and services – easier. In addition, an attractive health and well-being R&D sector could spring up in Finland, which would further enhance the already revitalised well-being business.
Sitra has launched a new set of projects to prepare for the establishment of an organisation focused on gathering together and co-ordinating well-being data. The working title of this is “Isaacus – the Digital Health HUB”.
From a single access point, this service organisation will provide data that can influence well-being (e.g. patient, demographic and lifestyle data) and open data gathered from various registers and sources. When gathering and processing this data, special attention will be paid to privacy protection, data security and the individual as the key decision-maker on how the data is used and by whom.
As a solution, this has the advantage of using all data in Finland while taking due account of the attendant rights. Citizens will be able to view their own data, as well as using it to maintain their own well-being and access services based on better data than now. Unhindered use of the full range of data generated by society will lead to better care and treatment with more impact, boost the efficiency of service production and research, and help the business sector to grow.
Sitra's projects are aimed at the preparation and launch of the Digital Health HUB. This is a continuation of previous Sitra projects which focused on issues such as management based on social and healthcare data, trials of self-care eHealth services, the development of eServices, knowledge-based well-being as a whole and the use of genome data in healthcare maintenance and illness prevention. The work will be done in extensive collaboration with the public and private sectors and NGOs. The Ministry of Social Affairs and Health, the Ministry of Employment and the Economy, the National Institute for Health and Welfare, the Association of Finnish Local and Regional Authorities, Statistics Finland and CSC - IT Center for Science are among the organisations involved. The project began in September 2015 and will be completed in autumn 2017.