ELIXIR Norway takes part in Arendalsuka 2026 with two panel debates on the future of health and research data infrastructure: one on Europe’s coordination of genomic and health data sharing, and one on federated systems as a way to share results without sharing the underlying data.

Event 1:

Tuesday 11 August @ 11:00 – 11:45

11:00-11:45 Healthdata without borders? Europe’s next big infrastructure leap: Helsedata uten grenser? Europas neste store infrastrukturløft
(In collaboration with ELIXIR Norway) 

https://ehin.no/arendalsuka-2026/  https://www.youtube.com/live/Zos10rrQl5Q

Europe is now investing significantly in both genomic data and broader health data sharing through initiatives such as 1+Million Genomes (1+MG) and the European Health Data Space (EHDS). Both initiatives aim to deliver better health services, more personalized medicine, and better research and innovation through safe and responsible use of data.

At the same time, these initiatives are being developed at both the European and national level from different starting points, with different actors, needs, and perspectives. This creates important needs for coordination, interoperability, and shared solutions that can help ensure that data can be used across research, healthcare, and national borders.

Seen from a Norwegian research perspective, this must involve a significant degree of collaboration across health registries, biobanks, national research communities, and infrastructures such as ELIXIR Norway, as well as participation in both European health and research initiatives.

How can we avoid repeating mistakes such as the development of parallel and fragmented systems that don’t communicate with each other?

Participants:

• Sushma Grellscheid, professor at Department of Informatics, UiB and Head of ELIXIR Norway

• Eivind Hovig, Co-lead of ELIXIR Norway and Professor at Oslo University Hospital

• Mariann Hornnes, Associate Healthdirector, HDir

• Therese Haugdahl Nøst, HUNT Biobank

• Even Birkeland, FHI (NIPH)

Thursday 13 August 10:00-10:45

https://www.arendalsuka.no/program/kan-vi-dele-data-uten-a-dele

https://www.nora.ai/events/2026/kunstig-intellingens-teltet-er-tilbake-pa-arendals.html

Data security, sharing, and storage have been high on the agenda in recent years. In academia, this was further brought into focus last year by political attacks on research and academic freedom in the USA. Within research infrastructure, this has been a particular challenge for the many research databases in biology, medicine, and climate. What used to be previously reliable partners from American institutions and technology companies now find themselves in troubled waters and appear less predictable.

How do we ensure open, accessible, and secure databases in the future?

Solution: Federated database systems. Through federated database systems, local databases can retain their independence while being connected to function as a single unit. Federated database systems provide increased data sovereignty, security, and control by storing data locally, as opposed to store it with an external actor. This applies in particular to the handling of highly sensitive information, such as human genetic data. Systems can also be linked with AI and search algorithms so that relevant results are shared, but not the data.

Learn more about federated database systems, what opportunities they offer, and how an investment in Norway and Europe could create ripple effects far beyond the need for data sovereignty and reliable research infrastructure.

Participants:

• Sushma Nagaraja Grellscheid, professor at Department of Informatics, UiB and Head of ELIXIR Norway

• Korbinian Bösl, seniorengineer, Data management coordinator for ELIXIR Norway

• Inge Jonassen, Head of Department of Informatics, UiB

• Gunnar Berge, SINTEF