It’s not hard to understand why most medical research projects would benefit from a robust, varied set of study subjects. But sometimes, the pool of participants doesn’t accurately reflect the ethnic diversity of society, says psychiatrist Dr. Collins Lewis, a professor emeritus at Washington University. He recently was recognized by the Global Alzheimer’s Platform Foundation for his efforts to encourage study participation among people of different racial backgrounds.
Lewis, who serves on the African American Advisory Board of the Knight Alzheimer Disease Research Center at Washington University, is devoted to educating the public, and he participates in clinical trials himself as a way of advancing medical knowledge and urging others to do the same. “Many African Americans are reluctant to join studies because of the history of racism in medicine and medical research,” he says. “I want people to understand that research today is not the way it used to be. To develop Alzheimer’s treatments that work for everybody, scientists need a broad spectrum of people in clinical trials—not just African Americans, but Hispanic, Asian and Indigenous people as well.”
He points out that study diversity is also important because ethnic groups have genetic variances that cause them to respond to treatments differently. “The United States is made up of people with many different backgrounds, and some groups have a higher prevalence of illnesses like Alzheimer’s, heart disease and diabetes,” he says. “It definitely contributes to study validity when we can examine a more diverse group of subjects.”
Lewis adds that it’s important to work with local churches, nonprofits and community organizations to educate the public about the importance of study participation. “Often, people don’t trust physicians and health systems, or they are afraid of seeking help for their health,” he says. “It’s a matter of connecting with them in environments where they already feel comfortable.”
He also is involved with a local theatrical group called Slaying Dragons that is devoted to removing the stigma surrounding mental illness. “We put on educational plays about subjects like Alzheimer’s, PTSD, depression, substance use and other topics,” he says. “Audiences can ask questions of experts from the KnightCenter, and it gives people the emotional backdrop they need to understand what patients go through.”
Dr. B. Joy Snider, director of the Knight Center, says Washington University research is expanding scientific understanding of Alzheimer’s in a number of important ways. “Studies like the Memory and Aging Project, in which Dr. Lewis participates, have taught us that we can use tests such as PET (positron emission tomography) scans and spinal fluid analysis to detect signs of Alzheimer’s in the brain five to 10 years ahead of memory loss or other thinking changes,” she says. “These tests can offer us an opportunity to prevent the disease from starting.”
According to Snider, another exciting new development is a blood test that can confirm a diagnosis of Alzheimer’s. The test was developed at Washington University by Dr. Randall Bateman, and Snider says research volunteers like Lewis helped make it possible.