Health researchers omit including speakers of languages other than English (LOE) in their studies due to lack of training, challenges securing interpreter services, budget constraints and other barriers, according to a new JAMA Network Open study.
"Non-English-speaking individuals are being excluded from research, and we wanted to understand why," said senior author Maya Ragavan, M.D., M.P.H., M.S., associate professor of pediatrics at the University of Pittsburgh . "Ensuring that everyone can participate in research, regardless of the languages that they speak, helps ensure that the findings are representative of the entire community, which ultimately makes for better, more robust science that benefits us all."
Speakers of LOE make up 8.2% of the U.S. population, but they disproportionately experience health-related disparities: They are less likely to have access to health care and more likely to experience adverse outcomes. Yet in a 2022 study, Ragavan and her team found that just 9% of pediatrics studies included non-English-speaking children or families.
To identify barriers to inclusion of LOE speakers in health research, Ragavan, first author Henry Hoffman, medical student at Pitt, and their team surveyed primary investigators and study coordinators at the University of Pittsburgh.
Of 339 survey respondents, 50% reported working with LOE speakers at least once in the last five years. Notably, about 42% of those did not proactively set out to include LOE speakers but reactively included them after the study had begun.
"The exclusion of people who use LOE or inclusion that is reactive rather than proactive suggests that language often isn't prioritized when researchers plan their studies," said Hoffman. "Leaving out people who use LOE worsens the quality of research and makes the findings less likely to apply to the general public."
Common reasons for not including LOE speakers were lack of training in how to include these participants, having a study that focused on an English-speaking population, having only English-speaking team members, not knowing where to find professional interpretation and translation services, scheduling concerns when using interpreters and a lack of budgeting for language services in grant proposals.
"Our study reveals significant barriers to inclusion of LOE speakers on individual and institutional levels," said Hoffman. "Addressing these barriers can help us adjust research practices to make research more inclusive."
To improve inclusion of participants who use LOE, respondents recommended increased access to interpretation and translation services, guidance on budgeting, methods training and networking with other researchers.
"I think the main takeaway from this study is that the barriers to including LOE speakers are highly addressable," said Ragavan. "For transformational change, there needs to be multi-level investment from institutions, researchers and funders as well as work to strengthen community partnerships."
Ragavan and her team are now working to develop and test training resources to support researchers in carrying out inclusive research. They're also interested in replicating this study at other institutions across the country and comparing perspectives from researchers in other fields beyond health sciences.
Other authors on the study were Tran T. Doan, Ph.D., M.P.H., of the Colorado School of Public Health; Olivia Migliori, Jaime Sidani, Ph.D., M.P.H., and Diego Chaves-Gnecco, M.D., M.P.H., all of Pitt and UPMC; Alisa Khan, M.D., M.P.H., of Boston Children's Hospital and Harvard Medical School; Sabrina Liu, M.S., of the Asian Pacific American Labor Alliance, Pittsburgh; Abby Jo Perez, M.S., of Hello Neighbor; Lani Mears, M.B.A., of the Filipino American Association of Pittsburgh; Benoit Kihumbu, M.S., of the Congolese Union of Pittsburgh; Khara Timsina, of the Bhutanese Community Association of Pittsburgh; and John D. Cowden, M.D., M.P.H., of Children's Mercy Kansas City.
This research was supported by the University of Pittsburgh Clinical and Translational Science Institute and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (K23HD104925).
