Cancer researchers form closer link to ‘real world’ via rural advisory board
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The University of Colorado has launched a volunteer community advisory board designed to provide feedback to cancer researchers on making studies more accessible and relevant to rural populations.
The advisory board — which meets virtually every other month — consists of 10 individuals from across the state with diverse backgrounds that include ranchers, teachers, regional health connectors and others.
“What’s unique about the Rural Cancer Advisory Board is that it is entirely made up of and focused on the voices of community members,” Hillary Lum, MD, PhD, associate professor of medicine-geriatrics at University of Colorado School of Medicine and faculty leader of the board, told Healio. “These are people with and without direct lived cancer experience who provide input directly to researchers who are seeking ways to make their research more relevant, more accessible and, ultimately, more helpful to individuals who live in rural settings.”
Lum, as well as project co-leader Adreanne Brungardt, MM, MT-BC, senior professional research assistant at University of Colorado School of Medicine, and Debra Hesse, a community member co-leader of the board, discussed the goals of the board and the progress it has made in improving access to lifesaving cancer care for patients in rural environments.
Healio: How did you assemble this advisory board?
Brungardt: Our first task was learning what already existed as far as rural cancer research networks and advisory boards. We found people both through professional networks and through personal connections. We interviewed interested individuals using a standardized set of questions about why they were interested and what they were hoping the group would be. We were able to provide clarification on the scope of the group. From there, our goal was to have diversity, so it wasn’t just a board of people with a medical background or people with former or current cancer experiences. That way, when researchers ask for input, they could get a variety of perspectives.
Lum: We are grateful for our partnerships with the cancer center. One partnership is through an implementation science grant, which is a research grant that seeks to address health disparities — especially rural health disparities — in cancer. The second partnership is with University of Colorado Cancer Center’s Community Outreach and Engagement Program.
We knew locally that across Colorado there was a gap in being able to improve the relevance of research studies, especially in rural areas. There is already a space for outreach and advocacy, but it wasn’t focused on research.
Healio: What specific issues does the group address?
Brungardt: We address a wide range of topics through inviting a broad set of researchers at many different stages of their research. Our volunteers give feedback on study needs, such as rural recruitment, access, data collection and intervention materials.
Healio: Is there a greater need for advisory boards such as this one?
Lum: There is an increasing need for patient and family advisory councils, specifically regarding the development of research studies. These advisory bodies can be broad or targeted to specific populations. We modeled this group off of U.S. veterans’ research boards, older adult research boards and primary care councils aimed at reaching ethnically and racially diverse and underserved populations. Here at the University of Colorado, we had examples of other research boards that were embracing the principle, “Nothing about us without us.” That’s a classic term that we support, and as researchers, we want to partner well and have input from people like Debra, who are potentially the ones saying “yes” to participating in this research.
Healio: As a volunteer, Debra, what is your role in the advisory board?
Hesse: Hillary and Adreanne do all the work. They bring the researchers to us. They send us emails prior to our 2-hour Zoom meetings, and we are encouraged to review the information to evaluate the scope of the research grant. They also ask us specific questions. They might want to know how to recruit in a small town or what their materials should look like to capture attention. As a patient, I love that they are putting these materials together and they are coming to spend time with us. They want to do it right — they want to do it well. We help them eliminate some of that dead space so they can hit the ground running.
There have been times where researchers have come and listened to everything we’ve said, and then come back and say, “Now we’re down the road, we’ve made some progress. What’s the next step?” So, it is very rewarding for us as volunteers. Everyone comes from different places, either as cancer survivors or relatives of people with cancer, or people who live in rural areas and have trouble just getting to the doctor. So many times, when we are visiting with the researchers, they’ll say, “I never would have thought of that,” because they’re not living where we are. We give them something they couldn’t find without us. Everybody wins.
Healio: How have these discussions helped increase researchers’ knowledge about providing cancer treatment to rural communities?
Brungardt: Many well-informed researchers may have asked for advice from colleagues or searched online for ideas about rural engagement. The benefit of our program is that they talk with people who have lived experience in this. Some of the tips and strategies that they learn may be general, but our group is also able to get down to the nitty gritty of any particular topic, like feedback on the wording of a particular recruitment flyer.
Healio: What do you hope will be the long-term implications of this project? How can other institutions form similar boards?
Lum: You obviously need leadership and vision. So, I would advise institutions to look at who the dedicated leaders are. Ideally, they come from different perspectives. I am a researcher, while Adreanne is a clinical research coordinator who has her own lived experience, being from a rural community. Debra is a community member who is a co-facilitator with Adreanne. I’m the faculty person in the background, and my role as faculty is to ensure that this is well-integrated into our organizational chart at the cancer center, or embedded into other funding mechanisms so that we can reimburse the members of the advisory board for their time. Each person gets a stipend, and we are very upfront about that. We ask for a commitment of a year, which allows nice on-ramps and off-ramps for individuals. Many of our members have stayed with us for 3 years.
We have materials that we co-created, which are our ground rules, roles and responsibilities. We have set up some longitudinal resources — such as member biographies — so we can all know each other. We also have an easy way to share that with researchers so we don’t spend a lot of time on introductions.
We opted for virtual meetings to meet our goal of having diverse reach across Colorado. Also, in establishing a board like this, it’s important to have relationships with the potential presenters. So, at the university, we have a lot of conversations to raise awareness among researchers who might not think their study has any opportunity to reach into a rural community.
In terms of the future of this program, I think there is always value in a researcher being able to communicate the goals of their science and make that link to the people they hope they’ll be able to support. Research-related advisory boards are helpful in asking researchers to really think about how research can be more clearly or closely linked to real-world situations.
Healio: Is there anything else you’d like to mention?
Brungardt: Another unique thing about our group — due to the diverse backgrounds of our board members — is a section of the meeting devoted to providing small amounts of research education, so our members feel prepared to know terminology that a researcher might use. This is beneficial when you have a group of individuals who might not have a research background. We want to lay the groundwork so that everyone has at least a basic understanding and we can start from the same page.
For more information:
Adreanne Brungardt, MM, MT-BC, and Hillary Lum, MD, PhD, can be reached at Division of Geriatric Medicine, 12631 E. 17th Ave., 8111, Aurora, CO 80045; email: adreanne.brungardt@cuanschutz.edu; hillary.lum@cuanschutz.edu; X (Twitter): @HDayLum.
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