July 30, 2024

Representation beyond language: Initiative pilot researches HIV/AIDS trials participation

While the estimated number of new HIV infections in the United States slowly declined from 2017 to 2021, HIV continues to disproportionately impact racial and ethnic minorities like the Hispanic/Latinx community. In 2022, the minority group accounted for 39% of estimated new HIV infections despite their number of new HIV diagnoses remaining stagnant compared to White and Black individuals. To address the HIV epidemic, research is pivotal in finding safe and efficacious preventative and curative alternatives to achieve the goal of Ending the HIV Epidemic by 2030 in the United States. Nonetheless, Hispanic/Latinx individuals remain consistently underrepresented in HIV clinical research, thereby restricting the broader applicability of research findings.

In autumn 2023, a research team of collaborators from the University of Washington and Fred Hutchinson Cancer Center were awarded a Tier 1 Population Health Initiative pilot grant to better understand this pattern of underrepresentation in HIV clinical research. In particular, they sought to better characterize the current landscape of HIV/AIDS clinical trials for Hispanic/Latinx individuals with Limited English Proficiency (LEP).

“With our research, we’re trying to understand how language access services can impact the participation of Latinx and Hispanic individuals who have limited English proficiency,” said Alison Cardinal, a co-principal investigator and assistant professor of Technical Communication at UW Tacoma.

“We needed to understand from the point of view of principal investigators, clinicians and community educators and recruiters what is happening on the ground. We have a general idea that there is a gap and language access affects healthcare. But we really needed to gather data on this problem, because we don’t have it,” said Cardinal.

The research team’s mixed-methods study will unfold in multiple stages with the goal of pinpointing common issues and prevalent trends impacting the Hispanic/Latinx population when attempting to partake in HIV/AIDS clinical trials. Initially, researchers will conduct formative assessments at different clinical research sites by evaluating the conduct of focus group discussions and conducting in-depth interviews with clinical research sites’ principal investigators, clinicians and community educators and recruiters.

The data collected will undergo analysis to pinpoint recurring themes and identify explanatory narratives regarding the enrollment of Hispanic/Latinx individuals with limited English proficiency in HIV clinical research.

After the project concludes, the team aims to share their findings and expand their research to include more underrepresented populations. “We’re presenting at AIDS 2024 in Munich, which is one of the largest conferences on HIV/AIDS in the world. We’re continuing to apply for grants so we can broadly expand who we are investigating and the groups that we are working with,” stated Cardinal.

Cardinal and her team will conduct their research at sites within the HIV/AIDS clinical research networks, which are funded by the Division of AIDS of the National Institutes of Health (DAIDS).

“The Civil Rights Act of 1966 provides guidance that every organization that receives funding from the federal government must provide language access services to individuals with limited English proficiency. If DAIDS funded research networks are receiving federal funding, there should be language access services available,” said Pedro Goicochea, co-principal investigator and former Senior Community Engagement Project Manager and coordinator of the Latinx Caucus of the Legacy Project of the Office of HIV/AIDS Network Coordination (HANC).

“There are nearly 60 million people speaking Spanish in the United States, and out of them, only 38% speak fluent English. If we want to conduct research that is equitable and reflects the diverse population of the U.S. we really need to address the language barriers to participation,” said Goicochea.

Ultimately, the disproportionate impact of HIV/AIDS on Hispanic/Latinx populations highlights a critical gap in equitable research practices. By characterizing the current environment of language access services in clinical research sites and identifying these shortcomings, Cardinal and Goicochea’s research team hopes to take the first step towards curating more inclusive research practices that better support the needs of all diverse communities.