Few People with Limited English Proficiency Participate in Stroke Studies
Individuals with limited English proficiency (LEP) are not routinely incorporated in acute care stroke research.1 “Health disparities exist among LEP patients. However, the true extent of these disparities is unknown,” says Amy Zeidan, MD, assistant professor at Emory University.
LEP populations could be excluded on purpose or could just be difficult to identify; the precise reasons are unknown. After analyzing 167 studies, Zeidan and colleagues found 13.2% used language as inclusion/exclusion criteria, and only 10.2% explicitly included LEP patients.
Zeidan and colleagues also examined whether studies explored outcomes by language, finding only 2% included language as a primary variable. “IRBs, researchers, funders, and journal editors should consider frameworks for research inclusivity to ensure all populations are appropriately and ethically included in research studies,” Zeidan urges.
Otherwise, clinicians and researchers cannot understand all health outcomes and ongoing disparities. “Inclusion of LEP populations in research is the first step required to better understand unique health needs, unmet needs, and potential interventions to address these,” Zeidan says.
It is critical for researchers to explore patient populations and language needs specific to the study institution. Ensure LEP participants are included in all studies, with appropriate access to interpretation and translation of study documents.
There also is a need for researchers to recruit team members who reflect the study population. This can ensure language concordance and help overcome language barriers in all aspects of the study design.
There are a few questions to ask when designing study protocols. Does the research team include members of the prominent LEP populations represented at the study site? Has the study team engaged with LEP populations previously? If not, how can they work with representative communities to ensure the study addresses the needs of the LEP population?
Further, how have the major LEP populations at the study site interacted with the health system previously? How might this affect their participation? Does the study inclusion/exclusion criteria unintentionally exclude LEP populations? If so, what barriers can be overcome to implement language-inclusive practices?
Finally, does the consent process take into account language-inclusive practices? Is information provided in a way that all populations can understand and access? Will written consent be a barrier to participation? Who is providing consent? Will study populations feel comfortable with this person and process?
IRBs have worked to address LEP populations as vulnerable. “It’s important the policies and practices implemented do not serve as a barrier for research teams,” Zeidan cautions.
Rather than making the IRB processes more difficult for researchers who wish to include LEP populations in their study, IRBs should work with researchers to overcome obstacles. “The IRB’s institution, and institutions more generally, should work to allocate funding for interpretation and translation rather than this being the sole responsibility of the researcher,” Zeidan suggests.
Individual funders could include requirements or incentives in grant funding mechanisms to account for language-inclusive practices, and encourage community-academic partnerships.
“Finally, journal editors could adopt policies to encourage language inclusion in original research studies, and actively recruit editors who have expertise in inclusive research practices,” Zeidan adds.
1. Zeidan AJ, Smith M, Leff R, et al. Limited English proficiency as a barrier to inclusion in emergency medicine-based clinical stroke research. J Immigr Minor Health 2022; Jun 2. doi: 10.1007/s10903-022-01368-y. [Online ahead of print].
Rather than making the IRB processes more difficult for researchers who wish to include underrepresented populations in their study, IRBs should work with researchers to overcome obstacles.
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