“Aging and health issues change life’s choices and limit our options. But we must adapt and learn new ways to stay healthy and active. … I want researchers to know that aging requires that adaptability. But the system can make things better for aging people too.”
“You see the color of my skin. You see my gender. You see my age. And you think you know something. But that is disrespectful. You need to ask and listen.”
These quotes come from members of the Boards of Older Adult Advisors (BOAAs), two groups organized by the University of Wisconsin–Madison School of Nursing’s Center for Aging Research and Education, which were formed in 2022 with support from the Patient-Centered Outcomes Research Institute.
Like other community advisory boards, the BOAAs provide feedback and share insights with health researchers. Unlike other boards, the BOAAs are comprised wholly of older people.
Older adults are the experts on their own bodies, lives, needs, and strengths. Engaging older people as research advisors has been shown to increase the relevance of research questions, improve study design, increase the number of older study participants, and improve the generalizability of research findings.
As another BOAA member said, “I want researchers to know we may not have the education they do, but we have what they don’t have: the knowledge and wisdom that comes from living our lives.”
Older adults represent a significant percentage of people who take medications and use healthcare services. More than 60 percent of older adults are managing multiple chronic conditions. Some older people experience the cumulative health impacts of life-long disparities. Yet older people are often underrepresented in health research, even among studies of the issues that most often affect them.
One BOAA includes residents of Madison, while the other includes residents of rural Southwest Wisconsin. Both BOAAs include people from communities at higher risk of health disparities: under-resourced rural areas and communities of color. Discussions with the BOAAs often reflect the intersecting identities represented in each group, which in addition to Black or African American and rural resident include military veteran, caregiver, farmer, and community volunteer.
The two BOAAs reflect more of the heterogeneity in the older population than one group could. They also allow for comparison and contrast. Some researchers bring the same questions or materials to both BOAAs.
“What a positive experience it was to meet with both groups. The experiences and perspectives of individuals and the groups as a whole were distinct,” said UW–Madison Occupational Therapy Program Assistant Professor Beth Fields, PhD, OTR/L. “It was particularly valuable to see the differences between the groups.”
Researchers who bring ideas, questions, materials, and data to the BOAAs have seen various benefits for their work.
“You can’t do research without people who are willing to volunteer,” said UW–Madison Department of Medicine Assistant Professor Adam Konopka, PhD. After describing his study to BOAA members, “we got to learn about what their concerns were,” as well as getting “vital information about how to help alleviate those concerns.”
“I learned that how I thought about the concept was not at all how they thought about the concept. That was critical,” said UW–Madison School of Nursing Professor Barb King, PhD, RN, APRN-BC, FAAN. “It told me a lot about the words I was using.”
BOAA members provided “significant perspective that added to the findings of our research study,” said UW–Madison Occupational Science graduate student Chloe Muntefering, MS, OTR/L. “Seeing the enthusiasm and level of participation from them led us to rethink how we were going to disseminate this—how we could bring the results of this study back to our community.”
The Rural and Madison BOAAs are now scheduling their 2025 meetings. Interested researchers can contact Diane with CARE at farsetta@wisc.edu or 608-265-9542 to learn more.
–Diane Farsetta; photos by Shalicia Johnson