Inside CONNECT’s working groups

How do the CONNECT partners work together? In this article, we take a closer look at the consortium’s three working groups, each with its own areas of responsibility.

From the left: Eimir Hurley from Oslo Cancer Cluster, Birgitte Lygren from Roche, Jostein Dahle from Ahus, Karoline Knutsen from AstraZeneca, and Eline Aas from the University of Oslo. Photo: Oslo Cancer Cluster

We spoke with the group leaders (see picture) to gain an overview of the groups’ work and priorities for 2025, and insight into their priorities for the coming year.

Diagnostics and clinical trials

For the working group focusing on diagnostics and clinical trials, Birgitte Lygren from Roche and Jostein Dahle from Ahus responded. Their working group aims to increase activity in clinical studies and diagnostics within precision cancer medicine in Norway, by functioning as a platform for public-private collaboration and network-building.

The overarching ambition is to ensure rapid and equitable access to precision cancer diagnostics and broad access to clinical studies for patients in Norway.

What have you achieved so far, and what would you particularly highlight for 2025?

“We previously conducted a targeted survey and interviews that provided shared insight into the real decision-making criteria used by pharmaceutical companies when choosing countries and sites for their clinical studies. We have processed and presented these results in various forums to elevate the discussion on decision criteria and contribute insights to relevant national initiatives,” said Birgitte Lygren.

She emphasised that they have also contributed to further developing a national study app intended to strengthen recruitment and increase visibility of cancer studies for healthcare personnel. The app supports the goal of increasing the number of cancer patients participating in clinical studies. This year, additional tumour groups have been added to the app, and it has been actively promoted, e.g. in Onkologisk Forum and on Health Talk.

You can read more about the app and try it on the website Studieapp.

“In addition, we contributed to a poster on ESMO about CONNECT and organised CONNECT Academy meetings. We have also written an article on last year’s clinical study survey, but we have not yet submitted it for publication,” added Jostein Dahle.

See the Academy meeting on the new national cancer strategy here.

The figure shows how the consortium’s work is organised. The three working groups are each led by two representatives, one from the public and one from the private sector. It was presented as a poster during the ESMO Congress in Berlin this October.

What do you see as the most important focus areas for 2026?

Next year, the group expects that building on CONNECT’s established public–private collaboration will be crucial, using the accumulated insights to set the course. A new strategy for 2026 is being developed, and it will guide further work.

“It will be important that CONNECT’s work aligns with the national cancer strategy, and that we can be an active driver of its implementation,” said Lygren.

Here you can find the Norwegian government’s national cancer strategy.

Implementation and financing

The second working group, on implementation and financing, is led by Karoline Knutsen from AstraZeneca and Professor Eline Aas from the University of Oslo.

In this group, industry, academia, authorities and clinicians have open, knowledge-based discussions of complex issues, such as Structured Expert Elicitation as a data source in health economic assessments, and frameworks for financing medicines in the clinical study IMPRESS.

Read more about IMPRESS here.

The group’s goal is to strengthen the implementation of precision medicine by developing and testing methods that provide a more robust decision-making basis and by contributing to predictable financing processes.

“This arena enables us to identify methodological and practical gaps early, align perspectives and arrive at solutions that actually work in the clinic,” said Karoline Knutsen.

The two strategic pillars in 2025 have been structured expert elicitation as a data source in health economic assessments, and frameworks for financing IMPRESS medicines (financing of expansion cohorts and long-term financing).

In 2025, the group conducted several pilots testing the use of experts as a data source in health economic models, including a structured expert elicitation pilot in collaboration with Oslo Economics and the University of Oslo.

Clinicians reported benefits, good technical execution and better discussions around uncertainty.

“We also organised a roundtable on 30 October, where we brought together academia, industry and authorities to discuss the use of structured expert elicitation and experiences so far. It is a good example of the value of this collaborative arena,” Knutsen emphasised.

The group reports progress in the work and discussions on financing medicines for the IMPRESS study. At the group’s request, Oslo Economics carried out an analysis to highlight relevant issues related to the financing of IMPRESS medicines.

Read the reports from Oslo Economics (in Norwegian only):

• Rapport om varig finansiering av IMPRESS-legemidler

• Rapport om evaluering av pilot for systematisk innhenting av ekspertvurderinger

The work has contributed to the government system for new methods, “Nye metoder”, adopting a clear financing process: financing of expansion cohorts is decided through group exemptions. For long-term financing, the medicine must be submitted for ordinary assessment based on a simplified documentation package from IMPRESS.

“For 2025, we want to highlight the effect of this partnership: faster shared understanding, a more predictable financing pathway after IMPRESS, and concrete learning points from the pilot that can be scaled,” says Knutsen.

In 2026, the group will further develop the collaborative arena. They will define a new mandate and themes for future work, based on the fact that long-term financing of IMPRESS medicines will be handled in the government system for new methods.

“We will continue to highlight relevant issues for the implementation of precision medicine, where the value lies in bringing together clinics, authorities, academia and industry to provide input that can be taken forward in the appropriate processes,” says Knutsen.

The group also plans to continue the structured expert elicitation work with new pilots and practical improvements.

Collection, access and sharing of health data

The third and final working group brings together stakeholders and observers from the Norwegian Institute of Public Health/ the Cancer Registry, the Directorate of Health, hospitals and industry to contribute to the strengthening of the availability and secondary use of biomarker and genomic data in Norway. The group is led by Eimir Hurley from Oslo Cancer Cluster and Steinar Thoresen from Nordic RWE.

The goal is to help build a more structured, interoperable and usable data infrastructure for precision medicine – enabling improved patient care, research, clinical trials and regulatory processes.

Eimir Hurley reports that 2025 has been a very productive year. Key highlights include a new national report on biomarker and genomic data (lung cancer use case).

The report provides a comprehensive overview of current challenges and opportunities in Norway – from data generation to access and secondary use – and shows how Norway can learn from other countries.

“This document will be an important knowledge base for authorities, registry environments and the health service in 2026,“ said Eimir Hurley.

The report is expected to be published during the first quarter of 2026.

Another achievement is the INSPIRE-BIO task force's work on structured molecular pathology.

The taskforce has worked across hospitals, registries, and vendors to develop a profile for structured and standardised reporting of molecular pathology results. This profile aims to ensure biomarker and genomic findings can be captured in formats suitable for reuse.

A third highlight from 2025 is the Biobank Norge project. 

This initiative, which will retrospectively analyse archived tissue material from lung and breast cancer patients, has begun and is now in the pilot phase. It is a collaboration with St. Olavs Hospital, Oslo University Hospital and the University Hospital of North Norway.

In 2026, the group will review results from the Biobank Norge pilot work to guide decisions before the full-scale study begins, as well as pilot the INSPIRE-BIO structured reporting profile in pathology departments to validate its usability in practice.

Finally, they will follow up on the mentioned biomarker report to ensure that recommendations are anchored and incorporated into strategies and processes.

«We look forward to continuing the work in 2026 and contributing to Norway's stronger position in precision medicine, both nationally and internationally,” said Hurley.