A healthier population in Sweden through better conditions for research on biobanks and health data

Important results from the project

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 long term 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.

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.