“In the world of research, we usually get asked [for input] after the questions are already formed,” says Mary, a member of the Madison Board of Older Adult Advisors (BOAA). “So, to include us from the very beginning of the process—I just feel it’s imperative!”
The Madison BOAA—like their colleagues on the Rural BOAA in Southwestern Wisconsin—meets with health researchers to provide input on study design, recruiting, data analysis, and more. The two BOAAs have shared their perspectives and lived experiences with researchers since 2022.
The community advisory board model is powerful. It has been shown to align studies with community needs, focus evaluations on outcomes that matter to patients, and increase the likelihood that research leads to real-world solutions. Yet there is a limitation: discussions center on questions developed by researchers.
What research do community members feel is most needed to improve older adult health? To find out, the Center for Aging Research and Education (CARE) at the University of Wisconsin–Madison School of Nursing recently asked both BOAAs.
Over two 90-minute meetings, each BOAA reviewed public health data for their county and the state. They discussed the factors that shape what they see as important research, such as their own or their relatives’ health concerns or caregiving experiences. Then they brainstormed research topics and questions that they feel would significantly improve health or healthcare for older adults. Lastly, each group prioritized their list of research ideas.
The resulting community aging research agendas reflect the Rural and Madison BOAAs’ priorities. The work was supported by the UW–Madison Baldwin Wisconsin Idea Endowment.
There is significant overlap between the two groups’ agendas. Both BOAAs call for more research to improve communication between healthcare staff and older people; to support family and friend caregivers; and to increase health promotion, behaviors, and prevention.
Differences between the two agendas reflect challenges facing each community. For example, the Rural BOAA’s research priorities include aging in place well, and social isolation and loneliness.
From her house, “I can’t see my neighbor,” says Deb, a Rural BOAA member. “So, if I fall on my driveway, nobody’s going to find me. Some researchers talk about technology as the answer, but so many people in Iowa County don’t have high-speed internet or cell service.”
Making homes more accessible supports two of the Rural BOAA’s research priorities: aging in place and social connections.
“How often have you heard, ‘I’d like to go to that birthday party,’” says Bruce, a Rural BOAA member. “But the house is not friendly. You may live there and not have a problem. You may not need grab bars in the bathroom. But suddenly, it’s like you just uninvited somebody. That is a big part of social isolation.”
The Madison BOAA research priorities include reducing disparities in healthcare and disparities in rates of Alzheimer’s disease and related dementias. Members predominantly identify as Black, African American, or multiracial.
The group’s research agenda opens with a statement on health disparities, which begins: “Historic and ongoing systemic discrimination leads to health disparities for people of color and others targeted by unjust policies and practices. Health issues that people experience today may have been caused or worsened by unfair limitations on their access to healthcare, information, transportation, and other resources.”
Many of the Madison BOAA’s research priorities—such as improving communication and reducing disparities in healthcare—are related.
“Discrimination leads to health disparities, which create distrust of healthcare providers,” says Denice, a Madison BOAA member. “Take the time to ask questions. Listen. Understand where other people are coming from. Be present.”
Joann, another Madison BOAA member, stresses that communication must be person-centered.
“I have MyChart and I’ve never been on it,” she says. “I need information in a different flavor. This is true of senior citizens. You can put stuff on paper, but what is their literacy level? Will they understand it? Find out how they want information. It could be a graphic, or cartoon images. It could be in large letters. You can’t expect every person to understand the material you give them, if it’s not provided in a flavor that they can understand.”
The two groups were enthusiastic about the process and the research agendas they developed. “Listening to everyone’s ideas was enlightening,” a Rural BOAA member commented. “I was amazed by the ideas that the group came up with,” said a Madison BOAA member.
Both BOAAs’ research agendas are on the CARE website, at: https://care.nursing.wisc.edu/board-of-older-adult-advisors/community-aging-research-agendas/
–Diane Farsetta