Last year a new group of research advocates came together to try and solve an issue: how do we get more participants from diverse communities involved in research studies?
Since last September, the Community Advisory Council at the Layton Aging and Alzheimer’s Disease Research Center has discussed how to improve outreach strategies in rural, minority and other underrepresented communities, how cultural sensitivities impact recruitment, and how to build stronger connections in those communities.
“At this point we’re getting the foundation in place and figuring out what topics to pursue in order to raise awareness of them in the broader communities we are involved with,” says Karen Wells, Advisory Council Chair and a Portlander who is also a member of the local NAACP and Multnomah County’s Public Health Advisory Board. “We are putting skin in the game by donating our time, energy, effort, and working our networks.” Advisory committee members are paid a modest stipend to honor their work.
The group so far includes Karen Wells and Ken Hurd, an Oregonian living in rural Redmond. Ken is a former caregiver and teacher, as well as a research participant involved in a few telemedicine-focused studies. “This group can really help and inform people,” says Ken. “If I could help someone in a way that I was helped, I would like to do that.”
Karen and Ken joined the Advisory Council with the goal of encouraging more people from rural, and underrepresented communities to participate in clinical trials and research studies. “People are people and you have to take care of them. With this group, we can help and really inform people,” says Ken.
Over virtual meetings, they have brainstormed several ideas to increase those numbers, such as networking with community centers, medical providers and care homes in order to get the word out. Increasing the diversity of participants involved in a research study allows researchers to generalize study results, make more effective therapies and to equalize the benefits of research innovations.
“We are all carbon based units; what affects one carbon based unit, affects the other one,” says Karen. “It’s the unique differences that often don’t get recognized, because no one knew to ask.”
The Advisory Council hopes to be the one that will continue to ask.
The Advisory Council meets regularly online. Do you have any suggestions or questions for the Board? Perhaps you may like to join? If so, please contact: Allison Lindauer at firstname.lastname@example.org or 503-494-6976.