A panel at the Advanced Topics for Oncology Pharmacy Professionals Summit discusses strategies to address patients’ fears and distrust of the medical and scientific community.
Addressing patients’ fears and distrust of the medical and scientific community should start by acknowledging the stains on US medical history that have etched those concerns into the minds of many Black individuals, explained cancer survivor and patient advocate Megan-Claire Chase of SHARE Cancer Support.
During a panel discussion at the 2023 Advanced Topics for Oncology Pharmacy Professionals (ATOPP) Summit, Chase noted that it wasn't long ago that Henrietta Lacks’ cells were used without her knowledge to develop cancer treatments at Johns Hopkins University, or the Tuskegee experiments that were conducted on hundreds of Black men in Alabama, who were unwittingly denied life-saving treatments during medical studies conducted by the Tuskegee Institute under the direction of the US Public Health Service.
“We really need our providers to have the cultural competency and awareness of [this history and] their implicit bias when they're talking with us, and to not talk down to us,” Chase said during the discussion. “A lot of times we don't understand it is an option for us to have a clinical trial, since it's not explained to us that you can be at any stage and find a trial.”
Panelist Darcie Green, executive director of the Latinas Contra Center, added that a systematic review last year on clinical trials and the presence of Latinos in clinical trials found that close to 70% of health care providers had moderate levels of implicit bias toward Latinos.
“Latino patients don't need to see that review to know that [this is true], because we've experienced it probably from our first interaction with a health care provider,” Green said. “What we're talking about is the distrust and fear that exists [toward the] scientific community and sometimes [toward] academia [and it comes from] a lifetime of experience in the health care system. This type of bias that is implicit in nature is very harsh in actuality, with very painful adverse health outcomes.”
Green explained that, along with acknowledging a history of bias, acknowledging that bias exists today is critical—because there is a lot of it. Also, Green noted the importance of acknowledging that the disparities that exist in clinical trials are not naturally occurring.
“It’s not a natural thing that Latinos are less likely to be involved in clinical trials. In fact, studies have shown that we are just as likely to accept and just as likely to be willing to participate, if not for these other barriers,” Green said.
She noted that to address this issue, it’s important to be “working with trusted messengers, working with other patients who've gone through similar experiences, and working to diversify and make more culturally competent teams. Also, make sure that Latinos are represented in decision-making positions.”
According to Green, patients notice whether the people at the table have their same lived experiences.
“If it's really important to you to make sure that there is increased representation, then you'll make those changes from the top all the way down,” Green said. “The burden of inclusion in diversity, equity, and inclusion [DEI], is on the decision makers, not on the patient.”
J. Renea Austin-Duffin, MPA, vice president of Cancer Support and Outreach at the Mary Bird Perkins Cancer Center, noted that access is another area to consider in conversations about DEI. Many people from diverse populations have other barriers that may prevent them from participating in clinical trials and its issues of access, Austin-Duffin explained.
Deborah Doroshow, MD, PhD, of Icahn School of Medicine at Mount Sinai, explained that she works as 1 of 2 lead physicians in Mount Sinai’s early phase trials unit.
“So, I see people who have advanced solid cancers who've been referred to me by their primary disease specific oncologists to consider a clinical trial,” Doroshow said. “I always start off every visit with the same 2 questions: Tell me what your doctor has told you about why they wanted you to come see me? And what have you heard about clinical trials? When I think about diversity, and I'll say this knowing that I am the White lady on this panel, I will say that I think about many different kinds of diversity—we have a lot of language diversity in our clinic. Luckily, all of our clinicians speak Spanish, but we also have a large Mandarin and Cantonese speaking population, we have a lot of socio-economic diversity, and we're starting to have more diversity across the LGBTQ+ spectrum.”
Doroshow explained that trans patients have been extremely underrepresented in clinical trials. For this population of patients, there are a lot of specific issues when it comes to treatment, such as the fact that they may have to sign their dead name repeatedly on consent forms.
“And that’s something we really haven't started to deal with yet,” Doroshow said. “But when I talk to patients about these 2 questions, I will tell you that about 99% of patients, wherever they come from, whatever they do, tell me that they're not sure why they're here to see me, their doctor said they should, and they haven't heard that much about clinical trials. And I take that as a tremendous educational opportunity.”
Doroshow explained further that she typically spends 1 to 2 hours with each new patient to fully engage with that opportunity.
“Everybody starts at a different place, and that's why talking about those initial questions is important,” Doroshow said. “I want to know what they know and what they're hoping to get out of the visit.”
Fabio Petrocca, MD, assistant professor of Medicine at the Chobanian & Avedisian School of Medicine at Boston Medical Center (BMC), agreed that this issue of time is key in addressing distrust of medical professionals among patients. He noted that the solution of diversifying the health care professionals and medical staff involved in the care of patients has been a topic discussed for many years.
“Personally, I don't think that's the solution, matching patients and doctors along racial lines—it’s not going to address the problem. The problem is creating the relationship between the patient and doctor so that these issues of fear and distrust can go away,” Petrocca said. “In my opinion, the only way I've ever been successful in achieving that has been by committing time. You need time to not just meet the patient, but you need to understand what they're looking for, why they are there—it's not always just because of their disease, they're sometimes looking for much broader support.”
Petrocca explained that in his work at the BMC, the vast majority of their patients need to be supported, not just in regard to their disease, but really mainly around their fear and mistrust in the medical system.
“A place like BMC allows that amount of time, and I feel very privileged to work there because it's recognized that there is a special need for certain patients that need time to be committed to those visits. And not every institution is like that,” Petrocca said. “There was a very interesting article in The New York Times a couple of weeks ago about how in the US medical system, the major issue for providers has become time—they just don't have time to talk to their patients. That's obviously another new problem. But, whether this will change now with AI and all of the promise of technology we all hoped for, I don't know.”
Petrocca explained that once you have that relationship with a patient, fear and distrust go away.
“And by the way, we're talking about clinical trials, but this is an even bigger issue in just regular practice. It's not just clinical trials,” Petrocca said. “It's a much, much larger problem.”
Austin-Duffin JR, Chase M, Doroshow D, Green D, Green S, Major J, Petrocca F. General Session: DEI in Research - Approaches to Improve Equity and Access. 2023 Advanced Topics for Oncology Pharmacy Professionals Summit in New Orleans, LA; July 15, 2023.