DIGIfor1healthSE highlights need for coordinated health data infrastructure in Sweden
To achieve sustainable access and utilization of health data – for excellent research, improved lifestyle, healthcare and precision medicine- requires coordination between national and regional efforts. This is also foundation for the DIGIfor1healthSE project, which is funded by Vinnova to coordinate Sweden’s health data project – a collaboration between five EU-DIGITAL projects and two national projects – to strengthen Sweden’s global competitiveness and attractiveness, and support national development efforts ahead of the implementation of the European Health Data Space (EHDS).
DIGIfor1healthSE is a four-year project, now in its second year. On May 26, thought leaders in the field gathered to discuss current status and future needs, as well as to present the recently published situational analysis which shows that several government inquiries and assignments, as well as regional and local initiatives and health data projects, aime to prepare for a national digital infrastructure and the implementation of the EHDS, which came into force on March 26, 2025. The analysis highlights the importance of Sweden developing a national digital infrastructure for health data with an integrated perspective on both primary and secondary use, in collaboration with relevant stakeholders.
“To enable secure and efficient access to health data, data must be released from the various systems across Sweden, and appropriate, harmonized solutions must be developed. This is essential to achieve interoperability across all areas – semantic, technical, organizational, and legal – while also integrating ethical and social considerations”, said Sevim Barbasso Helmers, project leader for DIGIfor1healthSE.
Szymon Bieleck, Head of Sector – Research and Innovation, Unit of eHealth, Well-Being and Ageing, DG CONNECT at the European Commission, gave an overview of health data needs and coordination initiatives on the European level.
“Healthcare innovation has become important and AI is one of the main priorities for the EU. As seen in commissioner Henna Virkkunen’s recent mission letter, AI strategy and digital public infrastructure are mentioned among top priorities for the European Union”, said Szymon Bielecki.
Szymon Bielecki further mentioned the recent work on AI continent action plan from april 2025 which specifically highlights five focus areas: building large-scale AI data and computing infrastructures across Europe; unlocking access to high-quality data for AI innovators; fostering innovation and accelerate AI adoption in strategic EU sectors; building a strong AI talent base and fostering regulatory compliance and simplification.
During the panel discussion with the DIGIfor1healthSE management team moderated by Malin Eklund from Vinnova, common challenges and opportunities were highlighted.
“In the European 1+ Million Genomes Initiative, focus is on providing services to improve research, healthcare, and innovation. It is essential to carry this perspective forward into future national and European efforts. All systems we build must be sustainable and remain relevant within the legal frameworks of the future, said Bengt Persson, Professor of Bioinformatics at SciLifeLab, Uppsala University and Director of National Bioinformatics Infrastructure Sweden (NBIS) during the panel discussion.
The national dialogue around health data continues this fall. As a next step, DIGIfor1healthSE invites stakeholders to a follow-up event on September 3, 2025 where focus will be on developing sustainable access and use of health data in Sweden ahead of the EHDS implementation. Save the date and register today!
“It is evident that active dialogue between stakeholders is a much needed tool in this context. We know that EHDS alone will not solve all needs of precision medicine and questions regarding secondary use remain. Sustainable data infrastructures are needed, and therefore Sweden and Europe must invest in long-term solutions and take an active role in shaping European frameworks to make full use of health data. I am looking forward to continuing the discussion in this group and also to bring in the government, authorities, regions, municipalities as well as Sweden’s industry and academia”, summarized Sandra Falck, chair for DIGIfor1healthSE.
