SWEPER: Increased Use of Data in Precision Medicine
Being able to offer a healthcare tailor-made for the individual, known as precision medicine, is based on the fact that healthcare, together with other authorities, has a well-functioning information management of data so that they can be shared with other stakeholders in a safe and secure way. The SWEPER project will show the way.
The background to the project is that the amount of patient data is growing rapidly, both in health care and directly through patients. These data are not used, because the work of the healthcare and the regulatory authorities cannot keep up with the development in this area. In this project, the healthcare organisations, the life science business community and the universities will jointly analyse what needs to be done to ensure that Swedish health data will be the necessary support to take maximum advantage of the potential of precision medicine. The aim is to be able to harmonise data between systems and regions so that they are adapted to the national information structure of the National Board of Health and Welfare (Socialstyrelsen), which includes terms and concepts, code works and the term bank.
What the project wants to achieve
A position where healthcare in line with the life science industry can access and benefit from the large amount of patient and health data that is available in Sweden. These data should be able to be used with a sustained patient integrity. In this way, Sweden can position itself well in life science and be attractive to both research and clinical drug studies.
How the work is done
In the start-up phase, the focus is on mapping legal opportunities and issues of competition neutrality. By 2018, new guidelines will be introduced describing how competition neutrality and law can create the conditions for sharing data as well as insight into new business models for how health data can be reused.
The next step is practical solutions for semantics. In collaborative projects, actors from the healthcare industry, industry and academy develop new concepts and functions. Digital dictionaries, based on the semantic starting point of different domains, is developed and mapped against machine-readable variables. The patient overview project will create metadata databases containing the content of the care and other sources, e.g. from the patient itself. Through these sources of knowledge, stakeholders should, for example, be able to test different AI solutions or create beneficial interfaces towards the information.
The project focuses on oncology because precision medicine has so far made the greatest achievements there. However, there is a great potential in other medical diagnostic areas, and that is why so many of the project’s issues are general and the methods of developing metadata databases and dictionary are made generic so that they can be reused by others.
The individual patient: The chances increase in order to get the best treatment.
The researchers: Increased availability to systematically work with the large amounts of existing data.
Industry: Increased access to the right patients for participation in clinical trials.
Project Manager Lars Lindsköld
+46-705-40 65 20
Facts about the project
To help Swedish health data become the support required to take maximum advantage of the potential of precision medicine – a healthcare tailor-made for the individual.
More than 20 partners from the healthcare sector, the life science business community, and the universities, including Västra Götaland region, Region Skåne, Karolinska University Hospital, Roche, Pfizer, Astra Zeneca, Lund University and the Karolinska Institutet. New partners are involved as the project proceeds.
We are happy to see more partners, so don’t be a stranger!
2017–2018 in the first phase with an option for an extension until 2020.
Support from Swelife
SEK 4 million in the first year (from June 2017). A possibility of another SEK 20 million until 2020.