A program initiated at the Dan. L. Duncan Cancer Center in Houston, Texas, raised the participation of African-American and Hispanic patients in clinical trials to levels that approached that of the general population of the center's catchment area.
"We set out to build a relationship with the community," said Maria L. Jibaja-Weiss, EdD, associate professor of family and community medicine at Baylor College of Medicine and director of outreach and health disparities at Duncan.
Dr. Jibaja-Weiss' group aimed to increase minority trial participation by investing in the research infrastructure at area hospitals. Their approach consisted of:
• Hiring bilingual and multicultural coordinators and nurses
• Partnering with hospitals to provide research office space, discounted investigational pharmacy services, and open access to laboratory and imaging data
• Increasing minority residents' awareness of clinical trials
• Obtaining institutional review board approval to collect racial and ethnic data from trial participants
The group saw significant and near-immediate results, with clinical trial participation from minorities rising by more than 55%, Dr. Jibaja-Weiss said. Specifically, in 2005 and 2006, minority patients participating in trials numbered 258; by 2007, that figure had risen to 340, and in 2009, it went up to 390 (2010 AACR Science of Cancer Health Disparities abstract A44).
In 2009, Dr. Jibaja-Weiss said that about 18.7% of the population of Harris County, which includes Houston, identified as African American while 16.8% of clinical trial participants were African Americans. Similarly, about 39.3% of the population identified as Hispanic and 35.4% of the trial participants were from this group.
"Clinical trials recruitment of underserved adult/pediatric minorities is possible with targeted strategies, dedicated research staff, hospital partnerships, and community involvement," Dr. Jibaja-Weiss said.
Latino patients may respond negatively to education materials—even in Spanish
Many minority participants who are already enrolled in trials still do not really comprehend what a clinical trial is, according to a study from researchers at H. Lee Moffitt Cancer Center and Research Institute and the University of South Florida, both in Tampa.
Gwendolyn Quinn, PhD, and colleagues conducted four focus groups that included 36 Hispanic trial participants or their caregivers. They found that most patients did not have an understanding of how a clinical trial works even if they were already enrolled in one.
"Approximately half of the participants described a clinical trial as a test or exam to diagnose and treat a patient," said Dr. Quinn, an associate member in health outcomes and behavior research at Moffitt.
In addition to not understanding clinical trials, study subjects responded negatively to clips from existing Spanish language DVDs and videos. For instance, the subjects did not like presentations in which the Spanish was dubbed, according to the study results. Also, many presentations focused on dispelling current misperceptions about trials, but this was not an area of concern to Hispanic patients (2010 AACR Science of Cancer Health Disparities abstract A8).
Dr. Quinn added that there was a great desire among Hispanics to learn more about clinical trials, but that they wanted the information presented to them in culturally, linguistically, and visually appealing mediums.
"Participants noted that information about clinical trials should contain elements of ‘hope,’ and ‘faith’, and ‘respect,’" the investigators noted. "The majority thought that if clinical trials were important, their primary care doctor would have told them to participate."
|Olveen Carrasquillo, MD, MPH
Don’t overestimate the level of health literacy
Previous research has repeatedly shown that doctors overestimate the health literacy of their patients, said Dr. Carrasquillo, chief of the division of general medicine at the Miller School of Medicine, University of Miami.
"That includes not only reading but also the understanding of health concepts," he said. "I think health communication is critical as part of the overall push to tackle some of these disparities."
Healthcare specialists need to learn to target and adjust their message to the end user, he stressed. Patients—and minority patients in particular—can be discouraged if they perceive the health message as being too generic.
"If you have people who don’t look like you, or don’t use the same kind of words you use, you can be turned off," Dr. Carrasquillo said. "The concept that one size fits all—that one educational message is appropriate for all age groups, all racial-ethnic groups, and both genders—really needs to be re-examined."