National course in user participation in medical and health research
On May 7-9, 2025, the graduate school course User Participation in Medical and Health Research was conducted at the Eitri Medical Incubator Center for the 4th time.
The course provides two ECTS credits for the fellows. The next course will be in spring 2026.
The main goal of the course is to stimulate increased user participation in medical and health research by communicating how user participation can be implemented in practice.
The course aims to 1) develop participants' ability to assess and communicate the added value of user participation and 2) stimulate real user participation in research projects and in future research activities.
Eitri provided a good setting for the 80 participants in the innovative course, including researchers, healthcare professionals and user advocates.
Participation is recommended
PhD fellows affiliated with the REMEDY Center are recommended to participate in future courses on user participation in medical and health research. A similar recommendation is given to graduate school students at CCBIO and Neuro-SysMed.
From collaborative teamwork to improved user participation
The course lasted 3 days. There were four blocks of group work where graduate school students, experienced researchers, health workers, representatives from user organizations and user collaborators discussed relevant issues.
Examples from selected partner projects (cases) and the graduate school students' own projects were discussed. In the groups, participants could challenge each other on conceptual understanding and contextual contradictions.
The researchers were given the opportunity to discuss their project in groups with user collaborators, as well as summarize highlights of the group work and the learning value in a "speed presentation round" in front of everyone in the course.
The graduate school students believed that the input from the users was of great value and would be included in the project and in further research activities.
One of the participants in the course believed that she became more confident as a user collaborator after the course. She had gained more knowledge about the processes in research and thus greater insight as a basis for collaboration. She found it useful and also benefited from meeting others from different fields.
“I experienced taking a step further in understanding my own processes in collaboration with user collaborators,” said one of the fellows.
She believed that the course had greater breadth and variety than expected and that there was a nice dynamic with both presentations and group work.
“It was a safe framework to present the project in,” she said. She also believed that becoming aware of the importance of keeping the project group updated on the process was valuable for the research.
New contacts were established
Both the course organizers and the participants expanded their networks. Experienced user contributors were connected to young researchers, and new user contributors built networks with more well-established user communities.
The panel debate that rounded off the course brought together communities across disciplines and organizations. It touched on the understanding of roles and the tension between representativeness and specialization in modern social structures.
It was emphasized that joint efforts are needed to strengthen diverse user participation in medical and health research!
Broad interaction
The heads of research schools Nina Agnethe Grytten Torkildsen (Neuro-SysMed) and Agnethe Engelsen and Erling Høyvik (CCBIO) have played a crucial role in facilitating the course at UiB, where Clinical Department 1 has contributed with administration and beautiful premises.
The subject managers Nina L. Jebsen (CCBIO) and Tone Skår (Neuro-SysMed) have experienced the collaboration between the partners as very rewarding and developmental.
Elisa Bjørgo from MATRIX, Marianne Skaar from REMEDY, Ingrid Fjeldheim Bånerud from FORMI, Laila Mathisen from NorHead, and Yvonne Nordvoll and Mariann Sundstrøm from NorCRIN, have represented the partners.
The skilled coordinators who held the threads were Anne Therese Kjellevold Hatle and Synne Geithus from Neuro-SysMed, and Sturla Magnus Grøndal and Tessa Lohr from CCBIO.
Students from the University College of Western Norway (Lene, Thea and Amalie) and from Stellenbosch University (Amo) made an invaluable effort to take care of practical details. The course organizers are very grateful for the support from the DAM Foundation via the Norwegian National Association for Public Health.
History
The course was established in 2021 at the University of Bergen by Neuro-SysMed and the Centre for Cancer Biomarkers CCBIO to strengthen user participation in research, strengthen expertise, and build networks across medical professional communities and user organizations.
In 2024, the National Association for Public Health applied for funding from the DAM Foundation to further develop the course to include all 4 research centers for treatment research in Norway: Neuro-SysMed (neurological diseases, Bergen), REMEDY Research Center (rheumatic and musculoskeletal diseases - Diakonhjemmet Hospital, Oslo), MATRIX (cancer - Oslo) and NorHead (headache - Trondheim).
The research and dissemination unit for musculoskeletal health, FORMI at OUS and the national infrastructure network for research support in clinical trials, NorCRIN, as partners.
The expanded partnership has added new disciplines, perspectives, and expertise to the course.
