At least 350 languages are spoken in the United States—a country that more than 44 million immigrants now call home. But when it comes to health care in their new home, this community faces a barrier in their care that others do not: limited English proficiency (LEP). It can make health care a daunting and challenging experience compared to others who are native speakers of the same language as their clinicians.
At PCORI, we are committed to making health care an equitable experience for all by addressing health disparities—one of our national priorities. This priority seeks to identify potential differences in prevention, diagnosis, or treatment effectiveness.
Rev. Mang Sonna is one of those immigrants and has seen firsthand the ways immigrants and refugees in his community experience disparities in health care. He emigrated from India in 2000 to pursue a graduate degree and has been serving fellow immigrants and refugees with LEP ever since.
Through his work as Executive Director of Bethel Neighborhood Center in Kansas City, Kansas, Sonna met and combined his efforts with Joseph LeMaster, MD, MPH, to become the Lead Patient Investigator on a PCORI-funded project.
Together with clinicians and patients at seven clinical practices in the American Academy of Family Physicians National Research Network, they explored the challenges patients with LEP face and designed a guide for building capacity for patient-centered outcomes research (PCOR) with them.
“It’s very difficult and confusing for refugees and immigrants to navigate through the healthcare system,” Sonna said. “I think those in the healthcare profession should know our struggles; that way they will be able to help us better.”
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Interpreting Your Health Care
When patients with limited English skills visit a doctor, they encounter challenges that other patients may not, including low health literacy and difficulty with language interpretation.
“It’s not really a case of what language do you speak but rather do the healthcare providers that are providing care also speak that language,” said LeMaster, who co-led the project.
“No question that patients in this population are at risk of safety issues in health care. If they are admitted to a hospital, they are more likely to have an adverse event.”
It’s why he teamed with Sonna. Beginning as a patient-physician dyad in the Patient and Clinician Engagement Program—part of a PCORI-funded project with the North American Primary Care Research Group—to learn about PCOR’s relevance to primary care, they later completed three projects with support from PCORI’s Pipeline to Proposal Awards.
While these condition-specific projects were beneficial, patients desired more. Specifically, they appeared to express an interest in projects that focused on capacity building and healthcare systems-facing outcomes.
Their subsequent Eugene Washington Engagement Award for capacity building from PCORI did just that. It focused on health care at the practice level, teaching primary care physicians and their patients how to engage and address topics related to conducting PCOR together.
In the process, their team found that patients with LEP enjoyed and could easily participate with the project’s engagement methods—World Café and Participatory Learning in Action.
Best used during the needs-assessment phase, World Café helps rank and prioritize answers when there is variation in patients’ and clinicians’ responses across clinic sites to distinct questions. The method included brainstorming ideas and identifying themes for categorizing responses obtained at each site.
The research team applied Participatory Learning in Action when one vitally important question required an in-depth exploration across all sites to obtain a richness of perspectives.
Every practice identified patient-clinician communication and lack of access to high-quality language interpretation when needed as challenges.
“What the community learned is that we are the best advocates for our own health and the health of our communities,” Sonna said.
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Coming Full CIRRCLE
Their work culminated in the creation of the Center for Immigrant and Refugee Research and Clinical Evaluation, which led to development of the CIRRCLE operational plan—a roadmap covering topics and lessons learned for primary care clinicians and patients with LEP to jointly pursue PCOR. The topics act as steps, which include identifying problems from patients’ perspectives.
"We were really trying to highlight ways to reduce health inequities that are occurring in the healthcare system," LeMaster said.
During the project, the team produced training videos and a webinar highlighting project results to connect with future research partners and other LEP communities.
"Projects usually do not strike at the root of structural injustice or inequity that may be baked into the way we are delivering health care,” LeMaster said. “If we are going to serve health disparities populations well, we have to move toward making structural changes instead of addressing one health problem at a time."
