Large-scale projects will streamline the use of health data

Information about an individual's health, care or life situation can be found, among other things, in care records, within care or collected by researchers. Health data can be used for everything from health promotion efforts to early detection of disease, better diagnostics, treatment and follow-up, but also for research and priorities in care.

- There is a lot of useful data, but it is in lots of different systems that don't work together. This means that we do not take advantage of all the possibilities available with today's technology. We need to find solutions that enable health data to be used better, both for direct benefit in healthcare, but also for research and development of, for example, new treatments and medicines, says Darja Isaksson, director general, Vinnova.

To make use of health data in new ways, many actors with different perspectives need to be involved and test new solutions. Vinnova is now investing in three so-called system demonstrators, where several different actors such as regions, universities and companies in the health field work together to test new ways of using health data in real environments.

The projects receive funding of SEK 30 million each over a four-year period:

Nationally making advanced molecular data available for care, research and innovation

The project will contribute to creating an IT infrastructure to be able to share advanced molecular data, so-called omics data, between all regions in Sweden in a secure manner. It will demonstrate on a large scale how Swedish healthcare, through a system change in the collection and making available of omics data, can speed up the introduction of precision medicine in care and create new conditions for research and innovation. It will improve data flows in clinical diagnostics and research through a national precision diagnostics platform. The project is part of the Genomic Medicine Sweden, national effort, which aims for more patients to receive better diagnostics and individualized treatment through gene sequencing, for example in the case of cancer.
The project includes Region Uppsala, Stockholm, Västerbotten, Örebro, Östergötland, Västra Götaland, Gothenburg University, Örebro University, Uppsala Universitet, Umeå University, Linköping University, Lunds Universitet, Karolinska Institutet, LIF, the National Association of Rare Diagnoses, the Cancer Network and Swedish Labtech, under the leadership of Region Skåne.

Project leader: Per Sikora, per.sikora@gu.se

Shift from documentation paradigm to assisted planned data collection in health

The project will tackle the problem of unstructured data on healthcare. It is about demonstrating on a large scale how a new type of planned structured data collection enables real-time solutions for various purposes. Data must be standardized already when it enters the journal. Collected data is stored locally in a clinical data warehouse before record keeping. By working with joint care plans with shared terminology, highly structured data can be used for, among other things, care planning, record keeping, quality work, quality registers, clinical development and research.
The project includes Region Uppsala, the Västra Götaland region, the Asthma and allergy association, three companies in the health field and Fass AB under the leadership of Karolinska Institutet.

Project leader: Martin Ingvar, martin.ingvar@ki.se

Using standardized health data to power innovation and the future of healthcare

The goal of the project is to contribute to the health data that is collected first being standardized and then creating information through a wide range of applications and areas of use. The basis of the project is the focus on informatics and the importance of standards not only being used for sharing data, but also for storage and knowledge management. The aim is to change the way care data is stored and handled in Swedish healthcare, so that lock-in effects disappear and the care information is freed up and becomes useful to a greater extent than is possible today.
The project includes Region Uppsala, Stockholm, Jönköping, Kalmar, Linköping University and two companies in digitized care, under the leadership of Region Östergötland.

Project leader:  Åsa Skagerhult, asa.skagerhult@regionostergotland.se

In addition to these three system demonstrators, a fourth project receives SEK 10 million in funding from Vinnova to work for two years on testing and developing a standardized and secure infrastructure that will contribute to solving challenges with sharing data from healthcare. Among other things, the project will contribute to enabling the transfer of healthcare information between healthcare providers and research institutions, through a combination of a centralized data bank and decentralized nodes for secure data management.
The project includes The university college in Kristianstad, Region Östergötland, Region Västerbotten and three companies under the management of RISE.

Project leader: Anneli Nöu, anneli.nou@ri.se