This week, ELIXIR Norway is taking part in Arendalsuka, Norway’s largest political festival, with two panel debates on the future of health and research data infrastructure.
Health Data Without Borders? Europe’s Next Major Infrastructure Push
Tuesday 11 August · 11:00-11:45 CEST
Bølgen 3, Arendal. Organised in collaboration with EHiN.
Europe is investing heavily in genomic data and broader health data sharing through initiatives such as 1+Million Genomes (1+MG) and the European Health Data Space (EHDS). These efforts aim to improve healthcare, enable more personalised medicine, and strengthen research and innovation through the safe, responsible use of data.
Because these initiatives are developing in parallel at both European and national level, coordination and interoperability across research, healthcare and national borders are essential. From a Norwegian research perspective, this means closer collaboration across health registries, biobanks, national research communities, and infrastructures like ELIXIR Norway, alongside active participation in the European initiatives themselves.
Panel:
- Sushma Grellscheid, Head of ELIXIR Norway
- Mariann Hornnes, Deputy Director General, Norwegian Directorate of Health
- Eivind Hovig, Professor, Oslo University Hospital
- Therese Haugdahl Nøst, Professor, UiT / HUNT Research Centre, NTNU
- Even Birkeland, Senior Adviser, Norwegian Institute of Public Health
- Moderator: Hans Jacob Moe
Can We Share Data Without Sharing?
Thursday 13 August · 10:00-10:45 CEST
AI tent, Tyholmen, Arendal. Organised by the University of Bergen. Session held in English.
Data security, sharing, and storage have been high on the agenda in recent years, and the topic became even more pressing in 2025 following political attacks in the US on research and academic freedom, which have made previously reliable American research infrastructure partners appear less predictable.
This session explores federated database systems as a possible answer: local databases retain independence while still being connected to function as a single system. This increases data sovereignty, security, and control, since data stays local rather than being centralised with an external party, which matters particularly for highly sensitive data such as human genetic data. Federated systems can also be combined with AI and search algorithms so that results are shared without sharing the underlying data itself.
Panel:
- Sushma Nagaraja Grellscheid, Professor, UiB / ELIXIR Norway
- Korbinian Bösl, Data Management Coordinator, UiB / ELIXIR Norway
- Inge Jonassen, Professor and Head of Department, UiB
- Gunnar Brataas, Senior Research Scientist, SINTEF Digital
- Chair: Dag Stenvoll, Coordinator, UiB AI
Why it matters
Both sessions point to the same underlying question: how do we build data infrastructure that improves research and healthcare without compromising security, privacy, and national control? As Norway’s node in the pan-European ELIXIR research infrastructure, this is central to our work, from coordinating with European health data initiatives like EHDS and 1+MG, to developing robust, federated solutions for sensitive research data.
Thanks to EHiN, the University of Bergen, and Arendalsuka for the opportunity to contribute to these discussions.
More info: follow the sessions via the EHiN Arendalsuka programme and the Arendalsuka programme.