In a new study published in the Journal of the American Medical Association’s Pediatrics, University of Pittsburgh researchers found that non-English speaking children and families were barely included in United States-based pediatric research over the past decade. Indeed, the study concluded that only 9% of pediatric studies included non-English-speakers, highlighting a lack of representation that has serious implications for health equity.
Of the 8,142 articles screened, only 469 (9%) included limited English proficient (LEP) participants. The most common language spoken by participants was Spanish in 75% of these 469 articles while 145 articles did not specify which language(s) were spoken by participants. Only 136 articles described the methods of language assistance provided, if any were used, to communicate with LEP children and their families.
Failing to include more LEP people speaking various languages is a significant failing. Not including people from various linguistic and cultural communities limits the utility of studies and scholarly articles. The low representation of LEP people in pediatric research also continues and exacerbates existing health care disparities and inequities based on spoken language, both of which were starkly evident during the COVID pandemic.
“It is frankly unfair and unjust that non-English speakers are not well-represented in pediatrics health research,” said study author Maya Ragavan of UPMC Children’s Hospital of Pittsburgh. “This study is a resounding call to action: We need to be more thoughtful and inclusive about how we involve people who speak different languages in our research.”
The University of Pittsburgh authors of the Pediatrics study relate that including LEP communities in research and scholarly articles requires extra thought and effort since, for example, “attracting different communities to register for research studies can be challenging.” However, such broad-based, inclusive efforts are necessary for medical research and studies to fully represent the U.S. population.
A January 2023 Journal of the American Medical Association Review includes compelling justifications for more inclusive pediatric research and how language barriers negatively impact access to medical care for LEP people.
“Language barriers affect health care access and quality, patient-physician communication, and patient safety. Nine percent of [LEP] individuals in the US are ages 5 to 17 years, and approximately 6 in 10 children of immigrants have a parent who identifies as LEP. Non–English-speaking children and parents face health care disparities and experience poorer health overall. Children with [LEP] parents experience higher communication-related adverse events, medical errors, and mortality. Non–English-speaking parents are also less likely to have a pediatric medical home and are more likely to report that linguistic and cultural barriers negatively affect the patient-clinician relationship. These disparities have led to multiple calls to action to provide linguistically and culturally affirming health care to LEP families.
An important step in improving equity for [LEP] communities is their inclusion in pediatric research. Inclusion of racial and ethnic minoritized individuals in research is critical to ensure that scientific findings are generalizable and relevant for all communities, to improve trustworthiness of research and health care, and to promote health equity.”
In addition, according to The Hill:
“Just 22 percent of studies that included these underrepresented [LEP] participants specified how oral communication was achieved during the research. Twenty-nine percent included how written communication occurred. More than 400 studies specifically excluded participants who were not fluent in English. Excluding non-English speakers from health research means that findings are not necessarily representative of the whole community,” said co-author Annie Chen of the University of Pittsburgh School of Medicine. “Diversity in research not only makes science better, but it also helps to dismantle structural barriers.”
Research is important for developing innovations to move the needle forward, but if we’re not giving non-English speakers the opportunity to participate in research, then we’re essentially silencing their voices and setting up yet another inequity, said Ragavan.
The [Pediatrics study] authors conceded including these populations is not always easy… Although initiatives are in place to recruit different minority groups to studies, these usually don’t extend to language inclusion, they added. Requiring researchers to specify how they plan to include speakers of different languages in their work could help address the problem, while funders could also consider offering bonus grants for inclusive research.”
The COVID 19 pandemic revealed that there is much to be improved in the United States’ approach to health emergencies and the reality of language-based exclusion. All too often, the lack of real time, qualified interpreters and the paucity of accurately translated necessary health care information resulted in individual and community harm during the pandemic.
The reality of health care disparities based on language has been laid bare over and over again since the pandemic’s start in March 2020. For example, a Journal of General Internal Medicine study, “Racial and Ethnic Disparities in Hospital Admissions from COVID-19: Determining the Impact of Neighborhood Deprivation and Primary Language,” strikingly concludes that:
“Minority communities, specifically non-English speaking and those with lower literacy rates, are more likely to be unaware of public health recommendations and are more susceptible to misinformation, which compounds a deep-seated distrust in healthcare due to historical discrimination and personal injustices.
To combat this, we must ensure all forms of communication are available in different languages and with a robust community dissemination strategy.”
Health Affairs, in a 2021 study, “Language Is Not A Barrier—It Is An Opportunity To Improve Health Equity Through Education,” identified medical and clinical education’s failure to teach future practitioners to communicate with LEP and disabled people, and the legal consequences of not doing so. These educational gaps play a significant role in health care often not including LEP communities in outreach efforts, clinical drug trials, and health care research, such as pediatric research according to the Journal of the American Medical Association
Building trust with diverse communities is key to including various linguistic communities in health care research and studies. Such trust often results when clinicians and medical researchers have been educated about diverse linguistic communities, their unique language and health care needs, and the imperative of cultural competency. According to Health Affairs:
“Research has shown that language-discordant encounters—or, in other words, encounters where the patient and clinician do not speak the same language—result in worse health outcomes, reduced access to health information, and decreased satisfaction with care. Conversely, language-concordant care improves health outcomes for individuals with LEP…
How do we work toward these goals of improving health care access and communication for all patients, regardless of language? One important yet overlooked opportunity is in how we educate clinicians.
Medical education represents a critical opportunity to apply language-appropriate health policies that support health equity, health care quality, and efficiency by:
- preparing all clinicians to identify patients with non-English language needs, build a positive patient-clinician relationship in the setting of language discordance, and navigate language assistance services; and
- teaching clinicians to communicate independently with linguistic groups to whom they wish to provide direct care.”
With more appropriate thought and foresight, medical researchers and clinicians can avoid the language inclusion chasm identified by the University of Pittsburgh. Such planning can avoid what Health Affairs and others have consistently identified – linguistically based health care disparities and inequities:
“LEP populations have historically fallen through the cracks of US health care. Health policy adjustments that support clinicians caring effectively for patients who prefer non-English languages is our opportunity to improve health and health care for our increasingly linguistically diverse community.”
© Bruce L. Adelson 2023. All Rights Reserved The material herein is educational and informational only. No legal advice is intended or conveyed.
Bruce L. Adelson, Esq., is nationally recognized for his compliance expertise. Mr. Adelson is a former U.S Department of Justice Civil Rights Division Senior Trial Attorney. Mr. Adelson is a faculty member at the Georgetown University School of Medicine and University of Pittsburgh School of Law where he teaches organizational culture, implicit bias, cultural and civil rights awareness.
Mr. Adelson’s blogs are a Bromberg exclusive.