By Melinda Young
Lack of trust is an important issue affecting recruitment of underrepresented minorities in research studies.1 When there is little trust for medical and research professionals among a particular underrepresented minority group, it is important for research organizations to build a foundation for trust before recruiting people for a particular study, says Jaime Perales-Puchalt, PhD, MPH, assistant professor at the University of Kansas Medical Center and the University of Kansas Alzheimer’s Disease Center.
Trust issues can be ingrained in the culture, or based on individuals’ personal experiences in healthcare. For instance, Perales-Puchalt encountered one research participant who did not trust a study’s recruitment process because he thought it was a scam.
“He had experienced miscommunication with the Affordable Care Act in the past, where the thought he didn’t have to pay for the insurance, but had to pay, eventually,” Perales-Puchalt explains.
Meeting underrepresented minority populations in their communities helps build a foundation of trust. “It’s very important to not just partner with community leaders, but also to assess the needs of the community,” Perales-Puchalt says.
The foundation of building trust is based on the concept of respect for persons, says Stephanie Kraft, JD, assistant professor of bioethics and palliative care at Seattle Children’s Hospital and Research Institute.
“We spend a lot of time in bioethics thinking about respect for persons, but we don’t have a good way to put that into practice,” Kraft says. “My research is to better understand how to demonstrate respect for participants in a meaningful way to increase trustworthiness of researchers and research teams.”
Investigators think about ethical research, but they might not be empowering and supporting their research staff and recruiters in the ethics of research and study recruitment to foster inclusion and diversity, she says.
“One thing we’re hearing from nearly everybody is that the way research teams talk with people has a big role in whether they feel respected,” Kraft says. “On the one hand, that seems obvious, but it also illustrates how important it is that we focus on the role of research staff and recruiters out on the ground, having conversations with folks.”
In a recent study, Kraft found that operationalizing respect and making it meaningful is critical to successful recruitment and retention. The study showed that demonstrating respect for persons in the recruitment and informed consent processes helped increase diversity in research. Additional research is needed to evaluate how people from diverse backgrounds define respect for persons, and what investigators could do to make them feel respected.2
“I asked people about their perceptions of trust and respect in both research and general healthcare,” Kraft says. “I assumed we would hear people were more trusting in healthcare than in research, but I heard answers that surprised me.”
When people discussed their impressions of research, they talked about the of the respect study for which they were recruited. They had a good experience with that, she explains.
“They said, ‘So far, I feel respected, and it’s good,’” she says. “But a lot of folks had examples of times in the healthcare setting when they might not have felt respected, or when they had other concerns about how they were treated.”
Kraft is analyzing data from the research, but the initial findings have raised more questions about how researchers can do a better job of demonstrating respect of participants: “What are those experiences in the healthcare setting that influence what people think about research, and how can we do a better job?” she asks. “It’s not just about treating people with respect in the research process, but also about how to treat people, more broadly speaking, with respect in the primary care setting.”
Some people endured specific negative experiences in healthcare, but there also are broader issues in how the healthcare system treats people in certain minority groups. That problem is more difficult to fix, Kraft says.
“Everything we do as researchers and clinicians is within the context of the bigger system,” she explains. “We need to take a bigger-picture perspective as we think about how to navigate some of these issues.”
It is difficult to tackle systemic issues related to trust among a minority community, but research organizations can help recruitment through simple measures, such as simply recognizing and listening to potential participants, Kraft suggests.
“That’s the No. 1 thing we’ve heard from people about showing respect,” she says. “That’s very doable for every researcher and every physician.”
- Perales-Puchalt J, Shaw A, McGee JL, et al. Preliminary efficacy of a recruitment educational strategy on Alzheimer’s disease knowledge, research participation, attitudes, and enrollment among Hispanics. Hisp Health Care Int 2019; doi: 10.1177/1540415319893238. [Epub ahead of print].
- Kraft S. Re-conceptualizing respect for persons to improve engagement with diverse populations: What are researchers’ obligations? Presented at the 2019 PRIM&R Advancing Ethical Research Conference, held Nov. 17-20, 2019, in Boston. Poster: 33.