Sherica Jones-Lewis bristled on her way to the basement.
"We've got to remember; we're doing this together."Prof. Ishan Williams, an NIH-funded and community-engaged researcher who studies dementia and caregiving
Two flights down, dimly lit corridors and scuffed linoleum led to a heavy door that read DO NOT ENTER. Following Stuart Berr, in charge of medical imaging, inside, the group pressed into a stuffy observation room with a view of an MRI machine and the platform for supine patients feeding its center.
“I sure wouldn’t do this willingly,” whistled Bryan Price, who, with Jones-Lewis and six other CAB members, was there to learn about the imaging process and offer feedback on how to recruit study participants of color. “Not if I could help it.”
While there is good reason that powerful, expensive equipment like the MRI and PET scan machines are tucked deep in hospital basements—their heft (4 to 6 tons) and sensitivity to light and temperature, for starters—there is no mistaking the imposition they pose for humans entombed in their clanging, claustrophobic quarters.
“The mantra, ‘Nothing about us without us’ really demands for the full and equitable inclusion of persons with disabilities . . . I truly view the community members I work with as my guiding compass to best understand what the needs are."Prof. Jeanne Alhusen, who studies reproductive access and exposure to violence among women with disabilities
But add to those factors Black residents' still-visit memories of segregated wards in hospital basements, a history of racial discrimination, profound marginalization, and an often deep distrust of healthcare professionals, and it’s a wonder that people of color ever find their way into Berr’s lab, even at a moment when record numbers of African Americans are diagnosed with and vulnerable to the ravages of dementia caused by untreated vascular disease.
African Americans are now twice as likely to develop dementias as their white peers, and often don’t seek treatment until symptoms are advanced, explained Williams, a social and behavioral scientist and associate professor of nursing who studies interventions for people with dementia and their caregivers. Reasons for the reticence run deep, making the work of nurses and scientists like Williams and Jones, and the role of advisory groups like CAB, slow, difficult, painstaking—and exceedingly important.
A growing array of funders now mandate the use of community advisory boards, or groups like them, as a condition of financial support, to assure transparency, and increase how quickly findings make their way into clinical practice changes and policy recommendations. That’s a good thing, said Jeanne Alhusen, associate dean for research, who relies on an advisory group comprised of women with disabilities to guide the work she does.
2xAfrican Americans are now twice as likely to develop dementia as their white peers
“The mantra, ‘Nothing about us without us’ really demands for the full and equitable inclusion of persons with disabilities,” explained Alhusen, an NIH-funded nurse scientist studying disabled women’s experience of violence before, during, and after pregnancy. “While my research stems from what I’m witnessing in the clinical setting, it’s critical to assure that the questions I’m asking are priority clinical issues or filling notable gaps. I truly view the community members I work with as my guiding compass to best understand what the needs are.”
Involving CABs may also help scientists recruit more people of color into clinical trials by ensuring that their methods and protocols not only pass muster but also move potential participants to take part.
“Yes, we strive to meet people where they are, but we’re also trying to think about how to have that bidirectional learning so that we’re not so separate: scientists, patients, and family members. They can call on us, and we can call on them.”Prof. Randy Jones, a community-engaged researcher and NIH-grantee who studies how patients with prostate cancer decide
Even though the stakes are high for people of color, few Black participants volunteer for clinical trials at UVA. Sometimes, that’s because they’re not asked, Jones said; other times, it’s because they don’t feel heard when they are engaged.
“In certain research and clinical trials, that’s often the part that gets left out,” explained Jones, associate dean for community partnerships and an NIH grantee who created a decision aid for men with advanced prostate cancer. “Yes, we strive to meet people where they are, but we’re also trying to think about how to have that bidirectional learning so that we’re not so separate: scientists, patients, and family members. They can call on us, and we can call on them.”
It’s precisely the space Jones’s and Williams’s CAB occupies. Since 2020, the eight-member group—which includes Jones-Lewis, Price, Wendy Cooper, Travonia Hughes, Enid Krieger, Wardenia Lassiter, Eme Martin, and David Simmons (BSN ’84, MSN ’93), a clinical instructor—has connected scientists and community members at health fairs, in churches, at community and adult day centers, and support groups. In the process, CAB members—who opine on everything from recruitment flyers to clinic hours, workflow, bedside manner and clinics’ paint and decorating choices—provide invaluable perspective, teaching scientists like Williams, who creates, deploys, and studies interventions for people with dementia and their caregivers—as they go.
Peering into imaging rooms at UVA’s Memory Clinic late last summer, CAB members peppered researchers, social workers, and radiology techs with questions:
- How long are patients inside the MRI machine?
- Can they have sedation if they want?
- Is there an effort to attract more people of color into imaging tech roles?
- What’s the salary that such roles offer?
- How long does it take someone who suspects dementia to get a neurological assessment?
- What resources are offered while they wait? Who tells them what they’re supposed to do after receiving a dementia diagnosis?
- And what does that conversation sound like?
It's the kind of insight that keeps researchers like Williams “in check” and “tethered to [her] purpose.”
“Sometimes,” said Williams, “we think it's great science for science’s sake. We forget the humanity of what we’re doing. But it’s disingenuous for us to go into community and ask for things and then not be willing to listen, act, and offer things back.”
Williams’s goal is to “create a continuous feedback loop where community members are valued as experts—how they live with disease, how they see it expressed, how they take care of one another, and themselves. Incorporating that into research is critically important.”
“You’re not doing anyone any good if you only publish things in a journal,” added Williams. “We need to have those conversations, to cocreate the goals of what the community needs and what our research goals are. We’ve got to remember: We’re doing it together.”