URMC team seeks to close racial gap in medical research
In early 2020, researchers at the Center for Health and Technology at the University of Rochester Medical Center were conducting one of their many studies, and they noticed a strange pattern.
“We focus on neurological disorders, and a lot of the participants at our study tended to be caucasian, but neurological disorders don’t discriminate by race,” said Ifunanya Dallah, a member of the study team.
Rochester is a diverse city, where nearly 40% of the population is Black, 48% is white, and at least 37% is Hispanic, according to the most recent United States Census.
The medical study’s lack of diversity was problematic, said Olivia Brumfield, another of study’s team members.
“If all of your research is being conducted on one kind of person, it’s not generalizable for the kind of world we live in, or even the people who live next door,” said Brumfield.
The team decided to look into why the original study failed to reach a broader range of people. Researchers spent six months developing a new study that would determine the factors that left out Black or Latino respondents.
Led by Dr. Gretchen Birbeck, the group of eight graduate and undergraduate research students developed the questionnaire that set out to get to the bottom of the racial divide.
The study, officially launched January, included out-of-the-box outreach ideas to disseminate the survey by focusing on groups that have direct connection to minority communities in Rochester — such as refugee groups, churches, community centers — and getting involved with leaders and advocates.
The survey asks several questions about the participant’s demographics, past involvement in a study, and what factors might have kept them from participating in the past, and what would make it easier for someone to participate in research.
Want to help?
The team is still collecting responses. It takes around 15 to 20 minutes to complete the survey, and the data stays with the research team at the Center for Health and Technology.
The questionnaire can be completed over the phone by calling (585)-275-9751 or can be completed online.
The research team said it also will conduct in-person outreach at public events such as the Public Market, festivals and recreation centers.
While the survey was released earlier this year, the research team hopes to get more answers to reach an informed conclusion that will help more people of color and from varying ethnicities to participate in research studies.
Brumfield said that the COVID-19 pandemic showed that it’s important for everyone to be represented in research, because it helps with medical advancement and in the end, the overall health of the community.
The survey also is available in Spanish.
Natalia Rodríguez Medina is a bilingual reporter covering the Puerto Rican and Latino population for the Democrat and Chronicle in partnership with Report for America. Follow her on Twitter at @nataliarodmed or email her at [email protected] You can support her work with a tax-deductible donation to Report for America.