Dr. Gamble said researchers should acknowledge that African Americans, as well as members of other racial and ethnic minorities, are not necessarily inherently mistrustful. Most, she said, have the same degree of trust in medicine and in biomedical research as any reasonable person. At the same time, she said, community attitudes and history must be respected, and community engagement and consultation must be authentic and present from the inception of the research project.
It’s a fine line to walk between realism and cynicism when building an engagement strategy. “Recruitmentology,” she said, is the evolving discipline of learning – and then implementing – the best ways to be successful in recruiting the so-called hard-to-recruit populations. The term, coined by Steven Epstein, Ph.D., professor of sociology at Northwestern University, Evanston, Ill., reflects a sociologist’s perspective on the tensions inherent in the relationships between the individual, the community, the recruiter, and the research team. Wrote Dr. Epstein: “[P]ressures to enroll underrepresented groups have stimulated the development in the U.S. of an auxiliary science I term ‘recruitmentology’: an empirical body of studies scientifically evaluating the efficacy of various social, cultural, psychological, technological, and economic means of convincing people (especially members of ‘hard-to-recruit populations’) that they want to become, and remain, human subjects.”
Another thorny question is how to extend the protections of the individual that were codified in the Belmont principles to the community. “These things are needed today,” said Dr. Gamble, but researchers and communities are still struggling with implementation.
Many questions remain, she said: How can [institutional review boards] become more competent in this area, and what ethical codes should apply when community-researcher relationships are assessed? Are the Belmont principles adequate to address the new facets of research that are entailed in community-engaged research? “What measures are needed to increase IRB confidence in community-engaged research?”
On the academic side of the equation, should faculty members be penalized in tenure and promotion decisions if their publication schedule is slowed by the time it takes to build community engagement?
Dr. Gamble said that though the way forward is difficult, clinical researchers will find an honest journey worthwhile. Recently, she said, she’s been favoring the concept of cultural humility, rather than cultural competence. Cultural humility is a term drawn from work begun by Dr. Melanie Tervalon, a physician with a private consulting practice, and Dr. Jann Murray-Garcia, adjunct assistant professor at the Betty Irene Moore School of Nursing at the University of California, Davis.
Cultural competence, she said, can be used in the service of opportunistic research, as was arguably the case with the Tuskegee syphilis study, where African American recruiters sought out African American institutions and their leaders to recruit research subjects who were members of that community. In contrast, she said, cultural humility involves ”a lifelong commitment to self-evaluation and self-critique,” with a focus on developing mutually beneficial partnerships and a commitment to ongoing active engagement.
These days, there’s another elephant in the room, said Dr. Gamble, and it takes the form of the Black Lives Matter movement. The concerns raised by this movement’s spokespeople move the conversation beyond the walls of the laboratory and the exam room.
“Because if we are serious about eliminating racial and ethnic disparities ... we cannot just use the medical model,” Dr. Gamble said. Conversations she is having about the realities of stubborn health disparities are increasingly engaging the criminal justice system, and addressing income inequality and educational inequalities, she said.
It’s not really a matter of town vs. gown any more, according to Dr. Gamble. Benefits flow both ways, because once academic medicine taps the wisdom that’s available, the community becomes a source of strength, knowledge, and expertise.
Dr. Gamble had no disclosures to report.
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