Solomon Carter Fuller Memory
Screening Day
Community-Empowered
Research
By Jonathan Gramling

Growing up in the small town of Hollandale, Mississippi on the southern fringe of the
Mississippi Delta allowed Dr. Consuelo Wilkins to see and understand the intersectionality of
lives and how members of a community fit together.

“I think about the things that I got to do that others who grew up in large cities would never get
to do and how the intergenerational communication and interactions were very different,”
Wilkins said during a phone interview. “I also think that the way that I see people is also
influenced by that, so that the segregation by class or socioeconomic status that you see in
larger areas wasn’t existent because it was such a small area. I think again, my appreciation
for all people and not really focusing on educational attainment or socioeconomic status is
because of that. I see people for themselves and their characteristics and their motivations
and their morals and not so much for things that you might see more of when they are in bigger
communities with more chances for segregation within communities.”

Wilkins was also impacted by seeing the health issues that she saw in the community. She
went on to graduate from Howard University School of Medicine in 1996 and began her
research career at Washington University School of Medicine in St. Louis. And it was here that
she began her research career that would lead her into community-based research on
Alzheimer’s disease.

“I actually started out being interested in osteoporosis and hip fractures,” Wilkins said. “In
medical school, I learned that Blacks, African Americans, didn’t get osteoporosis. We didn’t
get thin bones. We didn’t have so many fractures due to thin bones. And when I started my
Dr. Consuelo Wilkins is the executive
director of the Meharry-Vanderbilt Alliance.
residency at Duke, I saw a number of African American women coming in with hip fractures. That really got me interested in why that was
happening and why in medical school, I learned that didn’t happen. Obviously it was happening. And not only was it happening, but they
actually had worse outcomes. So when I was in residency, I started a small research study because I didn’t have that much time. And it was
focused on Alzheimer’s disease and I was looking at Vitamin D levels. African Americans and people of African descent have lower Vitamin D
levels. That is what the study was approved to look at. I found it really hard to get people into my study, not because they weren’t interested,
but because they were confused when I went to go interview them and try to tell them about the study. That’s actually how I got more interested
in Alzheimer’s disease, learning that there was also this connection between physical functions, problems with their mobility and increasing
the risk for hip fractures. And so, that sort of transitioned me to that space, which I found to be much more exciting from a research stand
point.”

There is a saying that if you can’t bring Mohammad to the mountain, then bring the mountain to Mohammad. Wilkins found that if she were going
to conduct research on African Americans and Alzheimer’s disease — something that was direly important so that the solutions to Alzheimer’s
are relevant to African Americans — she needed to conduct the research where they are.

“I transitioned much of my work to community-engaged research, in part because I wanted to study populations of African Americans and
people of African descent,” Wilkins said. “It was really a challenge to get them into research for many reasons such as the historical research
abuses, lack of opportunities to participate in research and any number of barriers to participate in research. And so, I thought, ‘Why not take
the research out into the community and get people engaged where they live, work and play?’ I wanted to engage them at their churches,
community centers and places that they were already going to. Why not take the research and do as much as possible in that environment that
I could instead of trying to get them into the academic medical center. I found that there were not just barriers to doing that in the community,
but there were also barriers on the research side. Within the institutions, people didn’t quite understand, number one, why I wanted to go out
into the community and number two, why I needed to spend money to pay for a room at the YMCA to do testing or why I needed to pay the
minister at the church or the community center administrator for helping me to recruit. So things that were fine to do inside the academic
medical center like paying for a recruiter or paying to rent a room didn’t seem to be okay outside.”

Wilkins has involved the community in all phases of her research to encourage high participation levels. In some ways, the community has
some control over the scientific research — without compromising the scientific process — to ensure that the research will not harm
community members and that the community will actually benefit from the results of the research. And at a time when rates of Alzheimer’s
disease are increasing in the African American and Latino communities, now more than ever, it is important that African Americans and
Latinos participate in Alzheimer’s disease research.

“For a long time, we haven’t known what the prevalence or the rates of Alzheimer’s disease are in minority communities,” Wilkins said. “And
we didn’t know that because there were few people who were participating in research. Now those numbers are increasing, but they still have
a ways to go. We’re still not doing as well as we need to in order to have a really good understanding of what the differences are in these
populations, especially in Alzheimer’s disease because we do know there is an association between Alzheimer’s disease and hypertension
and diabetes and vascular disease. If we don’t have enough people with those conditions in the studies, then we actually will never find out
the answer to those. It’s certainly still very, very important that we have more representation in these studies.”

Wilkins will be the keynote speaker for the Solomon Carter Fuller Memory Screening Day on Friday February 19th, 6 p.m. at Fountain of Life
Covenant Church and is free and open to the public. Wilkins will be focusing on the importance of community engagement in conducting
Alzheimer’s disease and other scientific research.

“I think we have to go beyond the education and awareness of the community to the education and training of the researcher to be more open
to ideas and changes in their protocol or refining them with that input, but also that culturally-relevant piece and the cultural sensitivity piece,”
Wilkins said. “Having individuals who have different backgrounds and different experiences, it is important for you to accept their advice and
input. Many researchers would benefit from having that kind of experience. I’ll also share for people who quite aren’t ready yet or don’t have
the system in place yet to do some of the things that I have done with bringing people in as part of the team. I’ll share a message that we’ve
developed here at Vanderbilt and Meharry called the Community Engagement Studio as a way of getting input in discrete ways from a group of
community members that can improve your research, but also help you get the results of your research out into the community in a different
way. So much of what I talk about will be framed around community although I will give examples that focus on Alzheimer’s disease and
memory loss, I won’t be spending a lot of time just talking about what the new treatment or advances in that field are. I’ll be talking about
advances in the field of engagement.”

Ultimately the fight against Alzheimer’s disease is a fight for the quality of life in the community.

“If we don’t actually have better ways of preventing and treating Alzheimer’s disease, we’re going to keep people alive longer only so that they
can die from Alzheimer’s disease,” Wilkins said. “As people grow old, they want to have their memory intact. I think for quality of life, but also
the cost of care for an individual who has Alzheimer’s disease is exponential compared to someone of a similar age who might have heart
disease or diabetes.”

Join the fight today.