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Breaking Language Barriers: Enhancing Patient Education and Clinical Trial Diversity

By: David Grew MD MPH

Rebuilding clinic with native language asynchronous content.

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For most US clinicians, it’s intuitively obvious that non-native English speakers are on the back foot in terms of engagement, adherence and potentially outcomes.  This is (of course) through no fault of their own, but is largely a result of the US health system’s antiquated approach to patient education in healthcare.  I know we can do better, and I recently took a deeper dive to learn more.

In this post, we’ll look at the obstacles faced by non-native speakers in understanding healthcare information, the limitations of interpreter services, the specific challenges of language barriers in clinical trials and what we’re doing at PRIMR to tackle these issues. 

The Challenge of Patient Education for Non-Native Speakers

Language barriers can make it difficult for non-native speakers to access and understand essential healthcare information. Research has shown that limited English proficiency can lead to poorer health outcomes, higher rates of hospitalization, and increased medical costs (Flores, 2006). Additionally, patients who struggle with language barriers are less likely to access preventive care and are more likely to have longer hospital stays (Nápoles et al., 2009).

Limitations and Pitfalls of Interpreter Services

While interpreter services can play an important role in overcoming language barriers, they are not without their limitations. In-person interpreters may not always be available, and remote services can suffer from technical difficulties, miscommunication, or lack of cultural competence (Hsieh, 2015). Studies have found that professional interpreters are more accurate than ad hoc interpreters (family members or bilingual staff), but even they are not immune to errors, especially when it comes to complex medical explanations.

Addressing Language Barriers in Clinical Trial Recruitment

The challenges of language barriers extend beyond patient education and directly impact the recruitment of diverse populations for clinical trials. Language barriers can limit the participation of non-native speakers in clinical trials, resulting in underrepresentation of certain populations and reduced generalizability of trial results (George et al., 2014). This lack of diversity in clinical trials can hinder our understanding of how treatments may affect different populations, and ultimately may contribute to disparities in healthcare outcomes.  For instance, a particular ethnic group may carry a genetic trait that triggers a side effect of a medication.  If a language barrier drives systematic underrepresentation on clinical trials testing the safety of that drug, this gene-drug interaction may go undetected.

We are not the first to address the issue of diversity in clinical trials. Key opinion leaders in the field, such as Dr. Mona N. Fouad (Fouad et al., 2016) and Dr. Charles R. Thomas Jr. (Thomas et al., 2017), have emphasized the importance of increasing the representation of diverse populations in clinical research. They have highlighted the need for culturally sensitive recruitment strategies and the importance of addressing language barriers in order to ensure that clinical trial findings are applicable to a wider patient population.

PRIMR’s Foreign Language Content Initiatives

This week we launched several foreign language educational content initiatives.  We started with a new Spanish language prostate cancer education module in collaboration with Dr Laura Zaragosa Cocero, a radiation oncologist in Madrid, Spain.  While doing a medical rotation at New York Presbyterian Hospital, Dr Zaragoza Cocero worked with research teams leveraging PRIMR content to educate eligible participants.  She immediately saw how we were addressing a painful problem, as well as the opportunity to scale into non-English languages. 

In addition, we developed Spanish language content for the Alliance RadiCaL trial, looking at using an infusible form of radiation for patients with metastatic kidney cancer affecting the bones.  Content is complete and currently in IRB review.  Next, for the Alliance IMMORTAL trial testing radiation with immunotherapy in metastatic bladder cancer, there was a need to better serve Cantonese speaking populations.  We worked with a professional interpreter to produce native Cantonese narration with Chinese character subtitles.

By expanding our foreign language services and offering patient education materials in multiple languages, PRIMR aims to help bridge this gap and contribute to a more inclusive approach to clinical trial recruitment. By making it easier for non-native speakers to access and understand information about clinical trials, we can help promote greater diversity and improve the overall quality of research.

References:

Flores, G. (2006). Language barriers to health care in the United States. New England Journal of Medicine, 355(3), 229-231.

Nápoles, A. M., Santoyo-Olsson, J., Karliner, L. S., Gregorich, S. E., & Pérez-Stable, E. J. (2009). Clinician ratings of interpreter mediated visits in underserved primary care settings with ad hoc, in-person professional, and video conferencing modes. Journal of Health Care for the Poor and Underserved, 20(1), 165-175.

George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104(2), e16-e31.

Fouad, M. N., Acemgil, A., Bae, S., Forero, A., Lisovicz, N., Martin, M. Y., ... & Wenzel, J. A. (2016). Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials. Journal of Oncology Practice, 12(6), 556-563.

Thomas, C. R., Jr., Pommier, R. F., & Andersen, M. R. (2017). Improving Diversity and Inclusion in Cancer Clinical Trials. Journal of Cancer Education, 32(4), 680-682.

FAQs:

How does PRIMR ensure the accuracy and cultural sensitivity of its foreign language educational content, particularly regarding medical terminology and concepts?

PRIMR collaborates with medical professionals fluent in the target languages and knowledgeable about cultural nuances. Additionally, the content undergoes rigorous review processes to verify the correctness of medical terminology and concepts while ensuring cultural relevance.

Are there plans to expand PRIMR's foreign language content beyond Spanish and Cantonese, and if so, what languages are being considered, and what criteria guide these decisions?

Yes, PRIMR has plans to expand its foreign language content beyond Spanish and Cantonese. The languages considered for expansion are determined based on several criteria, including the prevalence of non-native speakers in clinical trial populations, geographic distribution, and feedback from stakeholders such as healthcare providers and patient advocacy groups.

Can patients actively engage with PRIMR's foreign language educational materials by asking questions or providing feedback on content clarity and relevance?

Patients may have the opportunity to actively engage with PRIMR's foreign language educational materials through online platforms, or distribution by clinical trial teams.