Overcoming barriers to Hispanic participation
Overcoming barriers to Hispanic participation
It’s more than language
In the past few years, Hispanics have become the largest minority group in the United States, numbering nearly 41.3 million in the most recent U.S. Census estimates.
But they still make up a relatively small portion of the participants in clinical research. That gap is important and troubling, since diseases such as diabetes, hypertension, and heart disease are more prevalent among Hispanics and minorities in general than in the population as a whole.
The barriers that stand between Hispanics and research are varied and require a multifaceted approach to overcome, say those who work to improve minority participation in human subjects research.
At the University of Michigan (UM) in Ann Arbor, an outreach program that seeks to involve minorities of varied ethnic backgrounds in research has begun to make progress in winning the trust of the Latino community and to overcome logistical barriers to Hispanic participation in clinical trials. But there are no quick fixes, warns Louise Hahn, BSN, MSA, research subject advocate for the university’s General Clinical Research Center (GCRC).
She says institutions that want to beef up Hispanic participation need to be ready with the basics, particularly providing translators to decipher informed consent documents and to speak with potential participants.
Providing bilingual services — everything from the consent forms to the support staff — is essential for recruitment and retention of participants whose first language may not be English explains Hector M. Gonzalez, PhD, assistant research scientist in epidemiology at UM.
For example, the group he’s following in a longitudinal cohort study in California all are older than 60, and more than 60% prefer speaking Spanish. Gonzalez currently is conducting research among elderly Latino residents of both California’s Central Valley and Southwest Detroit.
"Many of them have lived in the country for 40-odd years, and they can communicate in English," he says. "But we want to ensure, starting with the informed consent, that they fully understand the relationship they’re engaging in as a partner in research."
Researchers must educate themselves about the cultures in their community and how to ensure the views of different ethnic groups are represented.
While lack of proficiency in English comes to mind immediately as a barrier to participation in research, it’s not the only problem encountered by researchers in recruiting the Hispanic population.
David Gordon, MD, associate dean for diversity and career development at UM Medical School, who heads up the school’s Minority Health Research Program, says the undocumented Hispanics often harbor mistrust, so it can be difficult to get Hispanics to trust a government entity such as a university, particularly when they may be in the country without proper documentation. "When we say we’re looking for Latino/Latina individuals to participate in research, there’s the barrier of: "What is this institution? Is it part of the police? What are you really looking for?’"
"Particularly when you’re doing something like signing people up for registries, where you’re asking people to identify by name, you find more concern from Hispanic individuals," he adds.
Gonzalez notes that when he began his work in California, the state had just been through a series of propositions that were seen as anti-immigrant, and community leaders were concerned that people wouldn’t be interested in volunteering for research through a state university. "There was concern that participants would be fearful that we were working for the government and turning in people with questionable immigration status."
Gonzalez says he dealt with the issue simply by not asking about a participant’s immigration status. And while participation in the research did require people to give his staff a lot of personal identifiable information, staff always explained the purpose of the questions and tests.
Gordon and Amelie G. Ramirez, DrPH, a cancer researcher and deputy director of the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine in San Antonio, both note that Hispanics also raise the same trust issues that many other research participants do: "Am I being used as a guinea pig? Why are you trying out this drug on me?"
Both researchers say participants need to get basic information about clinical trials, emphasizing the amount of research that’s already been done on the treatment, and noting that patients will receive the best standard care in addition to experimental treatment.
Joel Escobedo, a third-year UM medical student, recently conducted interviews with elderly residents of a Hispanic community in Chicago to discern their attitudes about participating in research. Despite lower education levels (most only had completed elementary school), most of the elders he interviewed knew about clinical research and believed it to be valuable.
The barriers most identified to participating in studies were logistical rather than cultural or psychosocial, says Cathy C. Lee, MD, assistant professor of internal medicine, with a focus on geriatrics, at the UM Medical School.
The participants said they would be more willing to participate if clinical research studies were conducted on weekends. While it was important to most that the researchers spoke Spanish, their ethnicity was not as important to these seniors. And nearly all said they would be more willing to participate if there was personal benefit or benefit to the Hispanic community as a whole.
Community advisory boards
As part of its effort to increase diversity in clinical research, UM’s Minority Health Research Program set up a small extension program at a health center in Ypsilanti, MI, which has a more diverse population, Hahn says. It also set up a community advisory board with representatives from various community, religious, and other groups in the Ypsilanti area.
Protocols accepted by the GCRC also are reviewed for suitability by the board; if the advisory board approves them, patients can be recruited at the Ypsilanti site.
Nancy Lowenbergh, BSN, RN, a community research nurse for the Ypsilanti Health Center, says she extends the university’s reach into Ypsilanti’s various minority communities. She speaks at churches and health fairs and passes out multilingual brochures at festivals and other community events.
"It’s very hard to touch our Latino community," Lowenbergh says. "That’s why I’ve been so active with [a local Latino festival], advising them on their health tent, so I can get to be known. Now, enough people have told other people, Yes, you can trust her,’ and they’ll talk to me now."
She says there’s a grocery store in town where it has taken two years for her to be given permission to post notices on a community bulletin board.
Lowenbergh and Hahn are adamantly opposed to so-called "helicopter" studies — where a researcher descends on a community, does a study, and disappears without ever coming back to let participants know the results of the work.
"These people are used to being used; therefore, they have no trust; and one of the things I’m doing is proving to them that I’m here to stay, and I’m not going anywhere," Lowenbergh adds.
In the past few years, Hispanics have become the largest minority group in the United States, numbering nearly 41.3 million in the most recent U.S. Census estimates.Subscribe Now for Access
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