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Historically and presently, Latinos are underrepresented in clinical research.
Researchers want to increase diverse participation in clinical trials to ensure that Latinos and other underrepresented populations benefit from advances in public health and medicine, including personalized medicine.
This is especially important amid a harmful pandemic that is disproportionately impacting Latinos.
In hopes of increasing awareness among Latinos and people burdened by COVID-19, the National Health Institute’s (NIH) Community Engagement Alliance (CEAL) Against COVID-19 Disparities Program created a new series of bilingual videos on clinical trials about vaccines and clinical trials to prevent and treat COVID-19.
“[Our] program focuses on addressing misinformation around COVID-19, engaging trusted partners and messengers in the delivery of accurate information and educating communities on the importance of inclusion in clinical research to overcome COVID-19, and most importantly, health disparities,” CEAL researchers state. “This is especially important for people unduly burdened by COVID-19 such as African Americans, Latinos and American Indians, Alaska Natives, who account for over half of all reported cases in the United States.”
Bilingual Videos Explore Clinical Trials, COVID-19 Vaccine
Part of the reason is distrust of the government and historic racial/ethnic discrimination.
“[People of color] don’t trust the fact that the whole issue of COVID-19 has been politicized,” Dr. Folakemi Odedina, a researcher at the University of Florida who has been studying minority vaccine concerns, told NBC‘s West Palm Beach affiliate WBTV5. “That increases the mistrust.”
The research team in the CEAL’s program conducted research on the most effective strategies for ensuring inclusion.
NIH’s CEAL created five informational videos both in English and Spanish that outline key points in helping Latinos understand the importance of clinical trials and COVID-19 vaccinations.
Three videos are concern related to the clinical trials and two related to vaccines.
Why Clinical Trial Participation is Important for Latinos?
For years, studies have shown that Latinos have a profound mistrust of doctors and scientists due to historic, systemic racism.
Consequently, Latinos participate in clinical trials at far lower rates than other ethnic groups. This perpetuates the health disparities.
Diversity in clinical trials is vital. Researchers have to test treatments in all groups of people to help ensure treatments and medical products are safe and effective for everyone who will use them.
Most current drugs and vaccines have only been tested on predominantly White populations. There is little opportunity to find or generate data on Latino participants.
Important differences exist in how people of different race groups respond to medical interventions, including vaccines. Information on those differences can then be included in the product labeling to help doctors and patients make treatment decisions.
Latinos comprise one of the U.S.’s largest ethnic groups. They make up 18.5% of the U.S. population. However, they only make up 1% of those participating in National Institutes of Health (NIH) clinical trials, according to a recent report. Overall, Latinos make up between 6-7% of participants in clinical trials.
There are many reasons for the lack of Latino participation in clinical trials. A lack of information in Spanish and not being fluent in English are some of the major reasons behind these alarming statistics.
“There are diseases that you have [out there], and this new drug comes out or this new therapy comes out and you want to know that at least people like you were in the study,” said Dr. Eliseo Pérez-Stable of the National Institutes of Minority Health and Health Disparities at the NIH in Washington, D.C, told NPR’s Latino USA. “It doesn’t mean we’re always going to find differences by race and ethnicity, but when we do, it’s really important.”
How Can We Get More Latinos into Clinical Trials?
Raising awareness is vital, according to Dr. Susan Vadaparampil, one of the principal investigators for CEAL in Florida.
“So that when we go to the next steps of trying to facilitate research around COVID-19 that it’s also with the preferences, the wishes, and the values of the larger community we serve,” Vadaparampil said in a press release.
You can also share our Salud America! “Juntos, We Can Stop COVID-19” digital communication campaign in English or Spanish to help Latino families and workers take action to slow the spread of coronavirus and getting the vaccine when available.
The #JuntosStopCovid campaign features culturally relevant fact sheets, infographics, and video role model stories to encourage Latinos to practice safe public health behaviors.
To engage more Latinos in research, Dr. Amelie Ramirez’s Salud America! program is creating Latino-focused recruitment strategies and systems for cancer and Alzheimer’s clinical trials. This work is supported by a grant from Genentech, a member of the Roche Group.
“Our new project will allow us to use culturally relevant digital health communications, advocacy networks, and clinical partnerships to promote health equity and advance clinical trials for cancer treatment and Alzheimer’s disease among Latinos,” she said.