Scalable solutions for information management in Genomic Medicine Sweden

Important results from the project

The purpose of the project was to strengthen existing investments in GMS from Vinnova. The investment was primarily aimed at legal issues and standardization within the field of informatics. The project has met many of its objectives, but it is clear after the project´s completion that further work is required. The project has clearly shown the limitations that currently exist within Swedish law and structures in care around precision medicine, limitations that we now have the opportunity to address.

Expected long term effects

The project has generated a report around the need for standardization that exists for data in healthcare, this report will be the starting point for future work on introducing standards for diagnostic data that will enable interoperability and national aggregation. Furthermore, the legal investigative work has not only resulted in the agreements required for data sharing and collaboration within the project, but also led to a government investigation into data sharing in healthcare headed by GMS legal counsel.

Approach and implementation

Just like many other projects in recent years, the Covid-19 pandemic caused delays due to key personnel within the regions having to leave their regular duties and join the pandemic emergency organisation. Another aggravating circumstance was a lack of competence, where a slew of new recruitments had to be carried out. Once personnel were on site, however, the work could proceed relatively quickly.