Clinical trials help medical professionals find out how effective new treatments are – but as Dr. Kevin Sneed, the dean of the University of South Florida College of Pharmacy points out, they’re not a “one size fits all” proposition.
"Very often, when we think about how are we going to effectively treat somebody, whether it be cancer, cardiovascular disease, or anything neurodegenerative in nature, when we do the clinical research to gather the evidence, if you don’t have enough people from enough varied backgrounds; we can’t automatically transfer knowledge gained in one part of the population onto another part of the population," Sneed said.
But minority populations – specifically the African American and Hispanic and Latino communities – don’t take part in clinical trials at a level that would give researchers the data they need.
There’s a variety of reasons for that. For African Americans:
"There’s always a lack of trust with the unknown, with the uncertainty, for a researcher to pop into a community and pop out as fast as he popped in, then there’s that unknown, people don’t really know," according to Walter Niles from the Hillsborough County Health Department’s Office of Health Equity.
He also pointed to past mistreatment of African Americans by medical professionals, including the Tuskegee clinical study where 600 Alabama sharecroppers with syphilis were tracked, but not treated, by government researchers for more than 40 years.
In the Hispanic community, there’s also distrust of medical professionals. But as Amparo Nunez, the Director for the Hispanic Services Council’s Bridges to Health Project, pointed out, there are other reasons as well.
"There is the factor of the language many times, and the transportation. In the two rural areas here in Hillsborough County, Plant City and Wimauma, there is almost very limited to none public transportation," she said, adding that some also have concerns over disclosing their immigration status.
The National Physician and Family Referral (NPFR) Project attempted to address the issue with a recent Community Advocacy Matchmaking luncheon that brought community leaders together with research coordinators from USF Health and Moffitt Cancer Center.
Sneed said the meeting served as an important first step – simply recognizing that the best way to begin solving the problem is by talking about it.
"To be able to sit down and have in-person conversation with community leaders around clinical trials is extremely important," Sneed said. "Now we can’t rely upon pamphlets, we can’t rely upon (broadcast) airwaves, it’s better to have a conversation."
That conversation gave researchers information about the communities they're working with. For one thing, Niles pointed out, the diversity of the research team can help with the diversity of the patient population.
"If there is a person who’s going to interview me, who’s going to examine me for a clinical trial, I’m more willing to trust them if we have similarities," Niles said. "That doesn’t mean everybody in the process have to identify with me, but there ought to be certainly some people that I can see across the spectrum of the research team that suggest that the group is diversified."
NPFR Director Patricia Sanders said, with the right direction, the Bay Area effort could have the kind of success her organization has seen in Dallas.
"We had about half a dozen (hospital clinical researchers), UT Southwestern, Parkland, Presbyterian, Methodist...involved," she said. "Today, a year later...every week we’re getting emails from either the stakeholder letting us know that UT Southwestern has an Alzheimer’s trial coming in and they’re going to be speaking at our church on Sunday. They have made the connection."
She added that this connection doesn’t have to be made only by the researchers. They can look in unexpected places inside their organizations to find community emissaries.
"These people you look at as your receptionists or your maintenance person or whatever, you need to look at them as resources," Sanders said. "Because they are in their own communities and they are in communities where they have churches, where they have whatever they may have, and maybe they can pass along clinical materials for you."
The researchers and community organizations present at the luncheon have already continued talking about what to do next. Sanders said that was the whole point: sitting both sides down to begin what will hopefully be a fruitful relationship.
"I think this will be the key turning on the motor to get started," she said. "We call ourselves the acorn – you guys are the oak trees. Make it happen."