A new $2.5 million grant from the National Institutes of Health is enabling 91ĢĘ²®»¢ University chemist to expand her research on racial disparities in Alzheimerās and other diseases. Robinson, an associate professor of chemistry and Dorothy J. Wingfield Phillips Chancellor Faculty Fellow, is the co-principal investigator on the R01 grant, which is designed to develop and test recruiting materials aimed at encouraging older African Americans to participate in Alzheimerās research.
An article about the research, āFramework for Creating Storytelling Materials to Promote African American/Black Adult Enrollment in 91ĢĘ²®»¢ on Alzheimerās Disease and Related Disordersā was in the journal Alzheimerās & Dementia: Translational 91ĢĘ²®»¢ & Clinical Interventions on Sept. 11.
Alzheimerās disease affects African Americans at twice the rate it does whites, and preliminary research by Robinson shows that more can be learned about Alzheimerās disease by studying biospecimens from African Americans. However, African Americans are profoundly underrepresented in Alzheimerās research, making it difficult for researchers, including Robinson, to fully understand why these differences occur and how to treat them effectively.
āIn order to undertake truly inclusive studies, the research community needs a better way to connect with African Americans who may have concerns about volunteering,ā said Robinson. āOur hope is to develop materials that speak to the unique questions and critical concerns African Americans may have about participating in research.ā
African Americans face a number of barriers to participating in Alzheimerās research. They tend to be diagnosed later than whites, have less information about the disease, feel greater stigma around the disease, and have high levels of medical mistrust as a result of this countryās long history of racism, the latter being one of the most critical barriers. 91ĢĘ²®»¢ers have sought to address these barriers in recent years through various other types of outreach and education strategies, but gaps remain.
In the first phase of their research, Robinson and co-principal investigator Jennifer Lingler, with co-investigators Judy Cameron, Ishan Williams and Keisha Ward, designed and tested the appeal of a novel storytelling approach to use in printed and video recruitment materials. Using ethnographic interviews with African American research participants and study partners at the , the team developed six distinct characters, or personas, to tell their stories about why they decided to participate and what the process was like for them.
Lingler, a professor at the University of Pittsburgh School of Nursing, has led the Outreach, Recruitment and Engagement Core of the ADRC for more than 10 years. āWhatās especially challenging about recruiting participants for Alzheimerās research is that studies are often seeking individuals who arenāt experiencing any symptoms of the disease,ā Lingler said. āStorytelling holds real potential to break through those challenges.ā
The stories centered on themes of community, inclusion and social change, emphasizing the ways that research participants give back to the community, and to help give peace of mind to their families. Instead of portraying patients as victims, the materials highlighted their role as vital partners in the Alzheimerās fight. Focus group feedback was encouraging enough to support further development.
With support from the NIH, the team has been refining and testing the messaging and materials developed in the Pittsburgh area, and is now expanding to adapt this approach for Nashville. āGeography matters,ā said Robinson. āOlder African Americans in the South have different life experiences than those in the Northeast, despite many having migrated to the North in early- to mid-adult life. These experiences strongly influence their beliefs about participating in medical research. The diversity of these stories across the U.S. is important to engaging African Americans in Alzheimerās disease research.ā
Robinson said these findings will inform best practices for outreach to African Americans across the countryāand, ultimately, help make Alzheimerās research more inclusive. āWe canāt truly understand how Alzheimerās works until we know how it works in everyone,ā she said.
