A healthier population in Sweden through better conditions for research on biobanks and health data
|Coordinator||Uppsala universitet - Institutionen för immunologi, genetik och patologi|
|Funding from Vinnova||SEK 1 054 890|
|Project duration||November 2018 - August 2019|
Purpose and goal
The project aims to produce an efficient and secure method of combining biobank data with health register data for the benefit of academic and industrial research. A platform for cooperation between healthcare providers (regions), universities, patient organizations, and industry has been established. The project proposes a technical solution for designing a feasibility service, which allows the linking of data between registries.
Expected results and effects
The solutions proposed by the project are expected to enable and generate improved medical research for the benefit of Sweden, science and most importantly the patients themselves. This will be accomplished by making the process from research idea to study more efficient, and by highlighting the collective potential of the information from multiple registers. Digital consent was originally included in the project, but we have concluded that it is out of the project scope.
Planned approach and implementation
Monthly meetings with a competent and dynamic project team have resulted in comprehensive discussions covering everything from monitoring to actual technical solutions and conceptual ideas for organization and governance. The project has experienced wide level support from both stakeholders and the project governing board on a fundamental level, as well as hands-on assistance on specific issues.