Because he wanted a “visceral take” on his potential subjects, Christopher Coleman, Ph.D., M.S., M.P.H., A.P.R.N.-B.C., A.C.R.N., F.A.A.N., sat for weeks in the waiting rooms of five Philadelphia clinics just getting to know older HIV-positive African American men, their families, and friends. He didn’t want to wait until he was ready to recruit volunteers for his latest HIV/AIDS study to introduce himself.
The experience not only allowed Coleman to build strong relationships with his possible study candidates, but to understand the challenges and unique cultural nuances that may impact their access to services.
His early engagement paid off. Besides getting input from the men and a buy-in for his research, Coleman, a Fagin Term associate professor of nursing psychiatry and multicultural diversity at the University of Pennsylvania School of Nursing, didn’t lose a single person during the ensuing study. More importantly, the professor was able to explain in detail how his study could truly benefit its participants in the end.
“They knew that I wasn’t out to hurt them,” says Coleman. “Once they trusted me, they were more likely to say to their neighbors, ‘Yes, this is a good person. Participate in his study.'”
Barrier of history
Recruiting minority patients for clinical research may be the most important challenge you undertake as a nurse. Racially and ethnically diverse people suffer many major health issues in disproportionate numbers to their populations, often with increased intensity. There are ample better health reasons to target such communities for clinical trials and research.
These same groups are underrepresented in the very studies that could improve or save their lives. The National Cancer Institute funded trials between 2003 and 2005, for instance, which underscored the disparities: although black people made up 8% of the study cohort—more than any other ethnic group—they were overshadowed by the nearly 90% of white enrollees.
As a minority nurse, you’re not only well positioned to bring parity to the research ranks, but you’re also doing it at an opportune time. With federal granting and regulatory agencies calling for better minority representation in health studies across the disciplines, there is definite focus on improving racial and cultural participation.
By pairing your nursing skills and cultural awareness with a foundation in research basics, you can be the ambassador for a study in your office or the conduit between investigators and the larger community. But be forewarned: that doesn’t mean people won’t question your motives. Even a shared culture doesn’t break down every barrier. However, by taking a page from Coleman’s experience and reaching out to the community, you can start building trust.
Why is that important? In recent years, racial and ethnic minorities have been noticeably underrepresented in research studies and clinical trials, partially due to lingering mistrust and a simple lack of outreach and community awareness. Given the suspicion many individuals still harbor from past abuses, specifically the notorious Tuskegee Syphilis Study, you’ll likely have to override general skepticism and even hostility.
The missing link
Fortunately, more recent studies suggest the overriding reason minorities don’t enroll in research has nothing to do with being afraid of the concept. Rather, it’s that they’re unaware of, and have no access to, clinical trials. Either their physicians aren’t involved, or the sites are far removed from where they live or work. (Minorities represent only 7% of the physician force—and an even smaller percentage participates in trials.)
Although those are challenges, they’re manageable challenges. With the right skill set and perspective, minority nurses are more than capable of facilitating trust building and serving as a conduit between investigators and communities. Sharing a common racial, cultural, and/or ethnic background with patients allows minority nurses not only to draw on the generic trust people have for nursing, but perhaps a certain kinship as well. Shared language, history, and values—these commonalities should help you advocate on behalf of other racially and ethnically diverse patients to investigators.
That’s not to say you’re automatically prepared to connect with another minority simply because you are a minority. Having an ethnic surname or proficiency in a second language is not enough to qualify. But if you’re aware and sensitive to the nuances and challenges of other ethnicities—and exhibit what anthropologists fi rst coined as cultural competence—you can be very effective promoting clinical trials to patients. You’re not only able to navigate research as a health care professional, but as a true cultural broker, making you well-positioned to bring others on board because you appreciate their concerns.
“People will react positively if someone takes the time to speak their language and communicate in a way that makes sense to them,” says Margaret Avila, M.S.N., M.S., R.N./N.P., P.H.N., a Los Angeles–based clinician and National Association of Hispanic Nurses board member. “We’ll hear patients say, ‘She really understands me. Even though she’s not like me, she still knows me.’ That attitude builds trust.”
Beverly Malone, Ph.D., R.N., F.A.A.N., and Chief Executive Officer of the National League for Nursing, agrees. “When I look in the mirror, I see you. You remind me of my daughter. You remind me of my family. And there’s an expectation that you’ll only be giving me information that will help me.”
Your efforts shouldn’t stop at the door of your hospital or clinic either. Although your persona and one-on-one interactions in the office will go far to establish your credibility, you still need to connect with the larger community. Even if volunteers for a given study can be identified in your clinic, being engaged outside the office strengthens your hand.
Most minority nurses already understand the importance of outreach in helping people of color take an interest in their overall well-being. They present at health fairs, talk at senior citizen centers, and organize other wellness events. They form partnerships with community leaders and organizations to engage individuals about their own health. Perhaps that describes you. Finding partners, making connections, and working throughout the community are powerful methods to change the health of any cultural group, but they’re also the very tactics that can help you establish your research bonafides.
Whether you’re collaborating with religious leaders or neighborhood figures, securing the support of influential decision makers is crucial for enrolling minorities. If you can prove to a respected fi gure in the community that your trial has merit and that you’re not just looking for guinea pigs, he or she can be an enormous asset in bringing others on board.
Besides someone vouching for you, your biggest asset may be your own reputation. By being a familiar face and positive force within the community, you solidify your standing so that when you need to convince others that participating in research is a good thing, you’ve already laid the groundwork. They’ll not only listen, but they may sign on with confidence that you’ll be there for the long haul.
“There’s a belief among people of color that researchers just parachute into the community, get them to participate, and then disappear,” says Daniel Montoya, Deputy Executive Director of the National Minority AIDS Council. “Nobody comes back and explains to them what role they played in finding answers. If more researchers followed through, people would have a better understanding of the importance of clinical trials and why they should participate.”
When Martha Funnell, M.S., R.N., C.D.E., research investigator for the University of Michigan Medical School and spokesperson for the American Diabetes Association, and her colleagues were organizing diabetes studies among African Americans in the Detroit area, they knew it was essential to visit black churches. As the center of community life, houses of worship were natural outlets for recruitment, especially since their pastors knew which parishioners could benefit.
Funnell and her colleagues also organized community center meetings to ask potential participants for their input. Although the studies had to address specific questions, they considered those responses in the design. As a thank you, the team offered to participate in any church or community health-related events. Now they have a cadre of church members and others willing to share their study experience with potential volunteers.
“Success in life is all about creating relationships,” says Funnell. “In this case, it’s getting to know respected people within the community. It’s involving patients in developing studies so we can truthfully say, ‘Your friends and neighbors with diabetes have been part of this design.’ It’s all about creating trust.”
Connecting with volunteers There are multiple other tools to connect with potential volunteers. For instance, many research studies are facilitated based on input from community advisory boards. By participating in such panels, health professionals not only have a say in who gets recruited but also in how protocols are shaped and marketed. For example, by knowing that the distance between East Los Angeles and UCLA might be too far for a cancer or HIV/ AIDS study volunteer to realistically travel, a minority nurse can make sure that investigators set up shop closer, or suggest the best ways to reach that audience.
When pharmaceutical companies contact New York City’s Charles B. Wang Community Health Center to enroll a drug trial, administrators don’t have to look far for potential participants. Besides working with clinic doctors to identify Asian Americans or Pacific Islanders who might qualify, they also reach out to their community partners in Manhattan, Staten Island, Brooklyn, and Queens.
Because the Center has established a reputation over the past 40 years as a stellar health care resource, people have come to trust its direct patient care as well as the health educational events it sponsors, supports, and/ or staffs in the community. So when the clinic lends its clout to a drug trial, it means something, at least in terms of trusting the source.
Despite the center’s reputation, many of the patients who’ve participated in the hyperlipidemia, depression, and hepatitis B medication studies have been as apprehensive as other minorities about the research process. For instance, they want to know “What happens to my blood test results?” or “Is this drug going to work?” or, of even greater concern, “Are you going to take away my medication?” Fortunately, because the types of pharmaceutical trials undertaken by the Center have either compared drugs or tested the efficacy of combined therapies, nurses can assure patients of continued treatment. Nevertheless, calming fears, Susan Seto-Yee, R.N., M.P.A., the center’s Clinical Director, notes, “is definitely still a challenge.”
When Constance Dallas, Ph.D., R.N., an associate professor at the University of Illinois at Chicago College of Nursing, recruited subjects for a longitudinal study on paternal involvement of low income African American teen fathers, she identified her target area, a swath of communities from the southern suburbs of Chicago north to Rockford, Illinois. Then she blitzed ads on predominantly black radio stations because she knew, as part of the community, that her prospective participants might be listening. “My colleagues were astonished,” she says. “I had a wonderful response.”
Dallas wasn’t surprised that the number of respondents who ultimately fit the study was fairly low, but she was shocked with the number of others who called in just to share, knowing they didn’t meet the criteria. “They were so pleased that somebody was interested in their story.”
Making sure people understand what’s expected of them in a clinical trial is essential. With potential misunderstandings and lingering mistrust from past research abuses, it’s imperative that you can translate a study, put it in context, and make sure that it’s a good patient fi t. You also need to be honest so that everyone’s expectations are realistic.
A major problem with Tuskegee was that participants had a general sense that doctors were tracking their “bad blood,” a local euphemism for any number of problems, but they hung in for decades without full disclosure. This was likely because a nurse from their own community, Eunice Rivers, kept them tethered, despite her own ignorance of the facts.
“Nurses really need to be careful not to fall into what I call ‘the Nurse Rivers trap,'” says Dallas. “It’s very important that they educate themselves about the research process and a particular study before they recommend or recruit someone into it.”
Nurses have had an introduction to research if they graduated with a university-based baccalaureate degree, but unless they’ve pursued a master’s or Ph.D., nurses are likely to not have been exposed to research in any significant way. In fact, one of the challenges facing nursing education today is increasing research experience at the undergraduate level while encouraging nurses of all ethnicities to raise their academic sights to the highest degree possible. Not only would an M.S.N. or Ph.D. give them a solid research footing, but also a seat as full-fl edged investigators at the study table.
Dallas’ study with the African American teen fathers, for instance, grew out of her experience as a family nurse practitioner working in a school-based clinic. As the principal investigator, she had input from beginning to end. “I think it’s wonderful to have people who are similar to the community involved in recruitment and data collection,” she says. “But if you leave out the interpretation and other decision-making steps, you’re leaving out the most important parts.”
In the meantime, there are other ways to boost your research acumen. Although many nursing organizations sponsor their own workshops and even institutes to bring members up to speed, another helpful resource is the Center for Information and Study on Clinical Research Participation (CISCRP), a Boston, Massachusetts, organization dedicated to educating both professionals and the public about clinical trials (www.ciscrp.org). CISCRP not only funds attitudinal studies, but it also offers many different tools to communities to dispel myths surrounding research.
Diverse health care needs
By engaging diverse peoples in clinical research, health professionals can speak with statistical confidence about a disease, diagnostic procedure, or treatment in a particular population. They also know that when they order a therapy, it’s dosed appropriately so they’re not doing any harm.
Not all research is going to lead to a cure or answer every question. But by recruiting individuals of different backgrounds, health care professionals not only have the possibility of understanding a disease, but also of creating more tailored treatments. By participating in that process, minority nurses can facilitate positive health changes—if not in this generation, then certainly in future ones. They also offer a safe, stable connection between investigators and patients.
“There isn’t anything more reassuring than having a nurse with familiarity look at you and say, ‘When they studied this drug, this is what they found worked and this is what they found didn’t work,'” Coleman says. “That kind of straightforward talk can have a huge impact on getting the public, particularly people of color, more involved in clinical trials. It’s putting our nurses out there.”
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