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Patient involvement in cancer biomarker research is a work in progress

Although patient involvement in research was not part of the program at the 12th CCBIO Annual Symposium, it is a topic CCBIO will give more attention to. We had a chat with a user representative who participated at the symposium, and who is also contributing in one of our research projects.

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CCBIO has to an increasing degree brought in the patient perspective in its activities, for instance through the very successful course CCBIONEUR910, Patient and public involvement in medical and health research, a collaboration with Neuro-SysMed. The last couple of years, a patient and public representative, Jeanette Hoel, was invited to attend the CCBIO Annual Symposium. As a user representative, she is currently collaborating with CCBIO’s Co-Director Line Bjørge in a research project. Jeanette is the former leader of the Norwegian Gynecological Cancer Society and currently secretary general in the ‘Norsk lymfødem og lipødemforbund (NLLF)’. She has years of experience from the health services, information work and voluntary work, and also has personal experience with cancer diagnoses. 

A need for more information to the patient organizations

We asked Jeanette Hoel how she felt about participating in a conference aimed at medical professionals.

“It is actually very useful to be here. Sure, a lot I cannot comprehend, but some I do catch, and I certainly understand how much cancer research there actually is which is never brought to the public attention,” she explains. “I think the patient organizations should have much more knowledge of this,” she continues. “I would like to see the patient organizations getting informed of this research activity and convey it to their members and to other affected people. It brings hope, you know? Certainly, a lot of the research does not bring a cure, but I still find it to be successful research. Then that particular idea can be eliminated, and efforts put into other ideas – or perhaps be used later in new contexts or when other discoveries or methods are available.  Either way, it’s not wasted. I also feel that it is important to represent the patient organizations at events like this, and those living with delayed injury after cancer – a field I hope to see more research in.”

A cancer research symposium for the public

Jeanette thinks the patient and public perspective could be taken into the symposium, by including a talk from a user representative, or even expanding the CCBIONEUR910 course to a symposium level. 

“Currently, it is mandatory to bring patient involvement into healthcare research, but not all on either side are aware of what this means, there is still a job to do.  You could have a patient representative giving a talk at this symposium on what that role entails, and what the patient organizations expect. In addition, a separate symposium could be dedicated to interactions between cancer patient organizations and cancer researchers, with scientific talks and posters presenting current research in layman terms. This would give the researchers experience in public dissemination, and would bring valuable knowledge to the patient organizations, and all in all increase the dialogue. I am certain that there are funding opportunities for such an event, for example from the DAM Foundation, as this should be of great public interest. I believe it would be motivating for both sides. It would showcase that we work together as key players in one team, working for the same cause,” Jeanette concludes.

Recruiting the young researchers

Jeanette has also participated in our Patient and public involvement in medical and health research course on a couple of occasions.

“Such a course is very rewarding to be part of, as you get a lot of knowledge on current cancer research,” she explains, and continues:

"Importantly, you meet the next generation of cancer researchers, and get to interact and discuss with them. Of course, we need to maintain the relations with the senior researchers, but recruiting the upcoming expertise is vital. They need to get the necessary knowledge to include the patient and public perspective in their research, and to get the best possible interaction with us as patient organizations from the start.”

Important to inform about the user representative role

Jeanette feels that the course is just as vital to educate the user representatives. 

“I am very concerned with communicating the role and responsibility that is actually entailed in being a representative from a patient organization – a user representative,” she says.

“The patient organizations are getting increasingly better at educating their representatives, I am myself taking an active role with that in my organization, but there have been challenges along the way. People have sometimes been put in this role without any knowledge of how to fill it, and with very little follow-up from the organization. There were no-shows and misunderstandings, leading to poor communication with the researchers. Some user representatives were preoccupied with conveying their own cancer experience only, trying to influence medical advice and guidance, which is not our mandate. A user representative is in fact a spokesperson for the whole group, with a real responsibility. On the other hand, the patient organization has a responsibility for educating their representative, and to let them understand that they are not expected to understand every scientific aspect of the research projects. They have other unique insights which are of high value for the researchers,” she says. 

“I firmly believe that as the patient organizations continue to educate their user representatives and let them know what is expected of them, things will fall into place,” Jeanette concludes.

Longterm relations provides optimal collaboration

"To truly harness the potential of patient representatives in translational and clinical research, it is crucial to establish and maintain long-term relationships with the patient organizations," CCBIO's Co-Director Line Bjørge explains, Professor, Researcher and Chief Consultant at the Women's Clinic in Bergen.

"Once this contact is in place, meaningful progress and impactful outcomes naturally follow, and you are able to move from passive information and consultation to a more active dialogue where the patient representative is involved already early on in the planning process. From my experience, that's when we get real cooperation," Bjørge says.

A long-term relation is exactly what Line Bjørge's group has achieved with Jeanette Hoel as patient representative.

"Jeanette Hoel has been a user representative in many of our projects throughout the last five years," Bjørge explains.

"She knows the team and our different research fields. The interaction and cooperation have resulted in better and more effective recruitment and retention of participants in the trials, better communication of the results to the community, and improved real word evidence as well as better project design. Our partnership is mutually beneficial encompassing regular meetings, educational initiatives and collaborative health-policy efforts alongside research support," Bjørge concludes.

Read more here about the most recent patient and public involvement course at UiB, and a recent article from Helse Førde, "Brukarmedverknad gir betre forsking" (both in Norwegian).