The last time my grandmother returned from the doctor’s office, she handed me a pamphlet that explained her condition and the different procedures she could undergo. Then she asked me what she should do. As an immigrant from Nicaragua, her preferred language is Spanish. Even though she knows basic English, it’s difficult for her to understand medical information, especially when it’s explained quickly. Like many patients in the US, my grandmother’s limited English proficiency creates communication issues that affect her ability to receive quality healthcare.
Communication challenges affect every medical specialty. That said, these challenges can be especially great in emerging fields like genetics, which involve technical terms and concepts that are unfamiliar to most and difficult to translate or explain clearly. Luckily, groups like the Clinical Sequencing Evidence Generating Research (CSER) consortium–in which I am a researcher–are studying how to make genetics more accessible to limited English proficient (LEP) patients.
Communication issues can result in patients not receiving the health services they need. For many LEP patients in the US, conveying health concerns to English-speaking doctors without an interpreter is difficult. Together, cultural and language differences between LEP patients and physicians complicate patients’ understanding of their health information. On top of that are structural barriers that make it difficult for LEP patients to access and pay for necessary health services, as much of the US LEP population is uninsured and low-income.
Research shows how communication issues are linked to worse health outcomes for LEP patients who are already medically underserved. Compared to English-speaking patients, LEP patients feel less satisfied with their care and interactions with physicians. Because of these negative experiences, LEP patients have low trust in the US health system so they are less likely to seek care when they need it, which, in turn, leads to worse health outcomes. The reality is that patients like my grandmother often don’t receive the same quality healthcare that I and other English-proficient patients receive.
In my own work on genetics, I’ve learned how communication issues play a role in inequities in access. Genetic testing is increasingly being used by doctors for prevention and to direct patient treatment, especially for cancer. Genetic testing—like screening for the breast cancer genes BRCA1/2—can benefit patients by providing information about their risk of developing certain conditions. However, medically underserved populations, including LEP patients, are less likely to get genetic testing because it can be expensive or simply because they aren’t aware of it. Consequently, LEP patients can miss the potential health benefits of genetic testing.
Given these concerns, initiatives like CSER are engaging in ways to get more LEP patients like my grandmother involved in genetic research. CSER’s overall goal is to learn how to effectively make genome sequencing part of the medical care of medically underserved populations. Seven study sites across the US are enrolling sick and healthy patients from different backgrounds in diverse clinical settings and studying any barriers they experience in accessing genetic services and doctor’s recommended follow-up care. CSER researchers define “medically underserved” as influenced by many factors: preferred language, health literacy level, income level, and insurance status. These factors are explored across CSER sites to learn how to improve access to genetic testing and related care for medically underserved populations.
CSER’s approach is an example of how genetic studies can begin to increase the involvement of medically underserved groups in genetics. A key part of CSER’s effort is finding ways to lessen the negative effects of communication issues. Since most CSER sites have large Spanish-speaking LEP populations, sites ensure all research materials, including consent forms and surveys, are in participants’ preferred language—English or Spanish. Sites are also using professional medical interpreters or bilingual staff to address language and cultural differences. Already, our research has revealed how professional medical interpreters help make complicated genetic information more accessible.
CSER also aims to mitigate communication issues related to low health literacy in any language. Literacy experts simplified all CSER participant materials to be as accessible as possible. Future genetic studies should also evaluate how to enhance and best support participants’ understanding of the study information given to them, particularly complicated genetic information, so their experience can be improved.
Many LEP patients in the US experience the same communication issues as my grandmother, but don’t have granddaughters who work in the field to help them understand complicated medical information. My grandmother’s story demonstrates the need to improve healthcare access for medically underserved groups now, especially as genetic information becomes more integrated in their care. CSER and initiatives like the All of Us Research Program can be models of ways forward for groups looking to involve underserved populations in genetic research. Ultimately, the goal should be to improve the experiences of my grandmother and all LEP patients with the US health system.
Amanda M. Gutierrez, MPH, is a Research Assistant at the Baylor College of Medicine Center for Medical Ethics and Health Policy. Her research focuses on improving health communication for medically underserved populations.