Among the long list of real and perceived barriers to participation in clinical trials by members of ethnic and minority groups, “not wanting to be a ‘guinea pig’” was cited more than twice as often by minority respondents vs. non-minority ones in a recent survey.
Describing this and other findings from various research into “Overcoming the Barriers to Recruitment of Underrepresented Minorities” in her ACRP 2018 session yesterday (April 28), Stephanie Williams, MS, CCRC, said such sentiments can often be tied directly to people’s knowledge of the infamously unethical, decades-long Tuskegee Study of syphilis that was funded by the U.S. government into the early 1970s.
Although not as commonly mentioned as a barrier to research participation as concerns tied to the awareness or logistics of trials by respondents to a survey of residents of recruitment areas for the Lindner Center of HOPE in Ohio, Williams said the “guinea pig” concept is something that can and must be addressed through efforts to increase engagement among underrepresented groups.
“Being transparent about what you are doing” in the study is important, Williams noted. “A big way to cut down on fear is through knowledge. Being aware of what some of the preconceptions people have of research are may help you have those conversations.”
Making potential participants more aware of trials means “going to where people are that you’re trying to recruit,” Williams added. When a requirement to come to a central study location in what may be perceived as an intimidating area gives pause to the target audience, educational outreach at community-based health centers, town hall meetings, and special events may be called for.
Beyond that, study site leaders should budget adequately in order to lessen the burden of any aspect of participating in their site’s studies they can, Williams said. This can include paying attention to enhancing patients’ transportation options and providing clear directions to the site, offering flexible scheduling of visits, and enabling some aspects of the study to be performed at home or by phone if possible.
Author: Gary Cramer