Developing a more specific gender-based marketing plan to engage minorities in clinical trials may increase participation.
In a new study conducted by Temple University professor Sarah Bauerle Bass, minority men and women with HIV were interviewed about what they perceived as barriers to entering a medication clinical trial.
The researchers then used a marketing technique called perceptual mapping to break down how the sexes differed in their responses.
"Perceptual mapping allows us to tailor very specific messages to address exactly what issues are for specific groups," said Bass. "Mapping by gender showed very specific differences."
Figuring out how to attract more minorities to participate in clinical trials has been an issue for researchers for many years.
Although the majority (68 percent) of people affected by HIV are minorities, approximately 70 percent of those participating in clinical trials for medication are predominantly white. The Food and Drug Administration and the National Institutes of Health have set goals to increase the participation of minorities in clinical trials for all diseases, but so far, the results have been tepid.
Overall, Bass found that "men's barriers tended to be more global. They talked about an HIV conspiracy, not wanting to be a guinea pig for research, and how they feared they might receive a placebo in the trial."
Women tended to be more fearful about how a trial medication might interact with their other medications and whether they had enough knowledge about clinical trials to make an informed decision.
"We saw that if you developed interventions in minority HIV patients without addressing specific issues by gender, you might gloss over important issues that differ between men and women, " said Bass.
Other researchers agree.
"Tailoring messages to gender makes a lot of sense," said Amy Nunn, a professor at the Brown University School of Public Health who was not involved in the study. "We do it already for breast and prostate cancer screening. It seems like this article helps map the way forward for HIV."
While saying that negative events like the Tuskegee syphilis trial remain real barriers for people in the African American community when it comes to participation in clinical studies, Nunn said it might be time to move forward.
"Many minorities are unsure about being part of research because they've been the brunt of negative research in the past," said Bass. "We need to tell people that we understand, that this has happened and you're absolutely right. But we also need to help them understand the process and design clinically and community based interventions tailored to specific needs."
"We need not to dismiss it because it is real, but instead of focusing energy on bemoaning the historical legacy, we need to think of new strategies because of the legacy," she said. "It's a conversation that needs to happen."
"While I think this study is an important one, at the same time it's amazing we're still here," said Stephen Thomas, director of the Center for Health Equity at the University of Maryland, University Park. "It's like we're stuck in a time warp. We've confirmed this information 15 years ago. And the fact that it's persisting to this point shows there is a persistent gap.
"If we don't figure out how to bridge this gap, there will be a persistent subpopulation of African Americans in particular and even other minority groups who will be a reservoir for HIV infection. And, more importantly, we will lose people that we need to understand but that we will be blind to because they are not participating in clinical trials.
"So exactly what Bass found in terms of differences between female and males I totally agree with, but the question is, what are we going to do about it?"
To push forward, Thomas has helped developed an interactive website called Building Trust (http://www.buildingtrustumd.org/) designed to educate minorities and researchers on issues around health disparities as well as clinical trials and how community participation in clinical trials can help improve health.
Though part of the answer may come from tailoring messages to specific issues, it also must address how issues are presented within minority communities, said Nunn.
"I think that the scientific community focuses too much on the negative rather than understanding the positives," says Nunn. "I'm hopelessly optimistic about these things that I believe simply require a nuanced approach. We need to change from how we move from a negative to positive conversation. There are so many positive things to celebrate."
She cites her own push to involve clergy in promoting HIV screenings in Philadelphia, where 10,000 people participated in Southwest and West Philadelphia.
The venue also matters.
"People need to be reached where they live," said Thomas. "They need to be treated with respect. The conversation of going into clinical trials should not happen first in an emergency room but in a barbershop, a beauty shop, or the church. There are little lights of hope where excellent projects have happened. But to turn the corner, we need much more scale."
"It's complicated," he said. "But we are not and should not be proud of what the current numbers look like."