Address Medical Mistrust to Recruit Minorities to COVID-19 Trials

Heather Boerner

October 29, 2020

To end HIV and control COVID-19, medicine must earn back the trust of people in Black, Latinx, and Native American communities, said Jonathan Mermin, MD, MPH, director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the CDC.

During the closing plenary of the United States Conference on HIV/AIDS October 21, Mermin laid out four principles behind those actions to the audience of USCHA:

  • Actively work with communities most affected by health inequities

  • Make plans to address them transparent

  • Work with community members on those plans and listen to their feedback

  • Do a good job

"Trust will come with proof of action," he told the audience, watching virtually from their homes and offices.

But clinicians can take action in the exam room and during clinical trial recruitment to help the process along, said Russell Campbell, MA, deputy director of the Office of HIV/AIDS Network Coordination at the Fred Hutchinson Cancer Research Center, Seattle, Washington.

"Distrust in the medical and research establishment has deep roots," he said during a presentation earlier in the week. To address this, clinicians must learn "culturally appropriate and meaningful engagement to influence the participation of historically underrepresented communities in healthcare and research."

From Slavery to HeLa to Clinical Practice

Medical mistrust doesn't stem only from the denial of treatment to the men who were part of the Tuskegee Syphilis Study. It also includes reckonings with the racist abuse of study participants by some of science's most acclaimed leaders. Take, for instance, J. Marion Sims, MD, the so-called father of gynecology, who gained much of that information by experimenting without anesthesia on enslaved women; or Cornelius Rhoads, MD, whose name was removed from an award at the American Association for Cancer Research when objections grew concerning racist remarks Rhoads made about Puerto Rican patients in the 1930s. Or consider the story of Henrietta Lacks, the originator of the HeLa genes that have guided oncology research. Her genetic material was being mined for oncological insights without her permission and without compensation.

"The groups that have been systematically and intentionally denied treatment and known cures for diseases on behalf of research have just really taken the brunt," Campbell said during a session role-playing best practices for addressing medical mistrust among potential clinical trial participants, conducted earlier in the conference.

"African Americans, American Indians, Puerto Ricans, Guatemalans, and others really still are heavily impacted by these abuses of research."

And it shows in clinical outcomes. Research into HIV antiretroviral treatment adherence has found that medical mistrust was associated with a 76% likelihood that Black Americans living with HIV would be nonadherent to their treatments. But race-based medical mistrust drew into question the necessity of treatment at all.

A 2016 study in the journal AIDS Care found that although White gay men in Boston and primarily Black gay men in Jackson, Mississippi both reported concerns about side effects and lack of culturally appropriate care, it was the Black gay men in Jackson who expressed stronger medical mistrust and more experiences of anti-gay and HIV stigma.

Add in the patient's own experience of microaggressions, discrimination, and other indignities of racism, and researchers suggest that medical mistrust could hamper the effort to recruit people from communities of color for COVID-19 trials.

Role-Playing Best Practices

So maybe it's not a surprise that, increasingly, medical communities are training providers in how to intervene on medical mistrust. In August, UCLA's Center for HIV Identification, Prevention and Treatment Services held a half-day session on addressing medical mistrust in Black communities, including role-playing as patient and clinician to show the do's and don'ts of recruiting for clinical trials.

Dr Carlos Rodriguez-Diaz

Carlos Rodriguez-Diaz, PhD, associate professor at the George Washington University Milken Institute School of Public Health, Washington, DC, and Ace Robinson, director of NMAC's strategic partnerships and its Center to End the Epidemics, were the two doing the role-playing this time. (NMAC, formerly known as the National Minority AIDS Council, organized the USCHA meeting.) In the session, each of them played the role of the clinician twice: once with all the usual interruptions of a clinical day; and once in a best-practices approach.

In the first scenario, Rodriguez-Diaz acted as patient, bringing up the example of Rhoads' work in Puerto Rico as a reason he was reticent to participate in the clinical trial. In the sub-optimal version, Robinson, as the provider, takes a phone call, doesn't take responsibility for the front desk staff's failure to return Rodriguez-Diaz's phone calls, describes the patient as "complaining," and tells the patient, "I don't know who this guy you're talking about it is, from almost 100 years ago…We really just need to get this paperwork done. And you can ask all those questions about, like, 'Oh did something happen in the past?' Because I can tell you right now that Dr Smith is really on top of everything."

In the best-practices version, Robinson doesn't take phone calls and doesn't interrupt when Rodriguez-Diaz is trying to describe how Rhoads' behavior reverberates for him today. Instead, Robinson describes how institutional review boards work, and how the institution trains employees to ensure they act appropriately.

When the tables are flipped, Robinson acts as a man just back from a Black Lives Matter protest, talking to Rodriguez-Diaz about participating in a COVID-19 vaccine trial. In this version, Robinson mentions Henrietta Lacks, and the sterilization of indigenous women in Canada under the pretence of cervical screening. And he talks about an aunt who was sick with the symptoms of COVID-19 but was sent home from the hospital without treatment.

"I don't think you guys know what you're doing," he concluded.

Rodriguez-Diaz rushes the conversation, awkwardly explains that he is looking for "people like you" to participate in the trial, and frames Robinson's participation as the researchers helping Robinson, and not the other way around. 

The take-home message, Robinson told Medscape Medical News, is that the intake needs to be patient-centered and needs to honor the participants' concerns.

"So you see I made sure I was listening, that I was not interrupting, that I was repeating back some of his concerns to make sure that I understood, because you don't want the telephone game," Robinson said. "And then we come to consensus and we can move forward. But none of that happens without a two-way conversation."

Or as Rodriguez-Diaz put it: "Focus all the interaction on the participant's needs. Provide the information that will make the participant feel comfortable."

Distraction and Hope for the Future

The distraction that Robinson and Rodriguez-Diaz raised is common, said Kimberly Smith, MD, MPH, head of research and development at ViiV Healthcare. Before that role, though, she was an HIV provider and has been involved in clinical research for years. And she said the current healthcare environment makes concentration all the harder.

"The doctor is trying, in the 15-minute window they have, to interact with the patient, find their information, examine the patient, potentially enter information into the electronic medical record, and then assess and prescribe refills," she said. "It does make the patient feel like, 'Are you even hearing me? Or are you focused on the next boxes that you need to tick?' "

When you add in historical distrust based on past experiences and current-day racism, focusing becomes doubly important. Smith said that participants have asked her about the Tuskegee Syphilis Study.

She learned to talk to potential participants about the rules and rights clinical trial participants have under the Geneva Convention. She explained all the changes in protocols that have happened since then and talked about how participants are protected. She explained what informed consent means — that the study has to lay out what the risks are in plain language so potential participants can understand what's being asked of them.

What she knows from studying HIV is that clinical trial participants are altruistic. And when they understand what informed consent is and how it gives them power, that helps too.

"They understand that this is their choice," she said. "They have a choice. They are empowered."

United States Conference on HIV/AIDS: Workshop Session 1: Historical Distrust Impact on Infectious Disease Research Community Engagement Efforts. Presented October 19, 2020.
Closing Plenary: Federal Perspectives on EHE Efforts in the Era of COVID-19. Presented Oct. 21, 2020.

Heather Boerner is a science and medical reporter based in Pittsburgh, Pennsylvania.

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