Building Trust to Overcome Medical Mistrust in Clinical Trials

Mariam F. Eskander, MD, MPH, assistant professor of surgery and a gastrointestinal surgical oncologist at the Rutgers Cancer Institute, and Coral O. Omene, MD, PhD, an associate professor of medicine, breast medical oncologist, and program director for breast cancer disparities research at Rutgers Cancer Institute, discuss how medical mistrust, particularly among Black patients and historically underserved groups, have impacted participation in oncology clinical trials.

Transcription:

0:10 | It's huge, right? Unfortunately, many people know the historical shame of our country, and that has led to dismiss us, right? So, for Black males, for instance, we all know of the Tuskegee trial, where for 40 years, black men were exploited, not given penicillin, just observed in the national history of syphilis in black males without giving them the drug. Did they know what they were consenting for? Did they know there was active treatment? It was tragic, and this went on for 40 years. Similarly, for centuries, black women were exploited, from the enslavement of black women, where procedures were done on them without anesthesia. There are just atrocities we know about, like Henrietta Lacks and the exploitation of her cervical cancer cells in research, just to name a few.

1:19 | From both the male and female black populations, they know, and it's in their DNA, in their thinking, in their consciousness, passed down for generations—that you cannot trust the system. This is what they will do to you, and that belief is ingrained. Even though many years have passed, it's still very ingrained for obvious reasons. Because of that, the healthcare system and providers need to understand that they have to do a lot of work to break down that mistrust to even get the patient to hear the positives of what you're trying to say, and the time it takes to do that. Unfortunately, some providers may not do that, and they may think the same explanation they give to everyone will suffice, but it will not. You have to know that the person in front of you probably thinks X, Y, and Z, and you can ask them questions to get a sense of what they're thinking. Also, follow up. If this patient listens to you talk for an hour and says, "Okay, I'll think about it," and then disappears, follow up. Have the team follow up. Ask, "What can we do to address your questions and make you comfortable?" When talking to them about a trial, help them understand that this is not experimental. Just knowing what they're probably thinking in their head and listening to you try to address that in your conversation will make them feel more trusting. But you have to understand that it takes work, and it takes time.

3:04 | If everyone did that, it would make headway, right? So the follow-up is key. If that person goes and hears from a distant doctor or all the caregivers, like, "Oh no, no, no," they may call back and say, "No, I don’t want to do it." The follow-up is key—saying, “Is there anyone you want to put on the phone, maybe family members? Put them on the phone, and then you’re all talking.” That way, one of them might chime in. The more people hear, the more people talk about it, and maybe they'll look it up, and say, “Okay, this sounds okay.”

3:38 | All of this helps. It’s not going to be overnight, but it helps. Understanding and trying to make a dent that way helps, because it’s clear that the issue of mistrust, ingrained for generations, is a barrier that prevents patients from hearing the provider. The provider has to understand where that’s coming from. It’s not that the patient doesn’t care or doesn’t want to—there’s a real reason. It’s from racism and exploitation that still exists today. We all know that. It’s very hard to break that, because the issues that led to this are still around, and patients live it in their real-life experiences every day. So, you have to know that, acknowledge it, and it must be part of how you talk to them. That’s something that has to be done by everyone in every aspect of the healthcare system when interacting with these patients. They come with that experience and belief system, and for their benefit, you have to understand and address it in every way you interact with them.

5:00 | Yes, if I can add one more thing, I think the awareness and confronting of the history and the issue is very important. But I also caution providers not to use medical mistrust as an excuse not to talk to patients about clinical trials. It's one of those things Dr. Omene and I were talking about, like, "Huh? Does this patient trust me? Do they have this inherent mistrust of the healthcare system? Are they going to want to join this trial?" That's the kind of thinking, again, that excludes patients. There’s good data showing that when black patients are engaged about clinical trials and told about clinical trials, the rates of agreement or joining a clinical trial are actually high. Yes, most patients will join a clinical trial, and a large part of that is because there’s trust between the provider and the patient. Of course, we have this horrible stain on our history with all the horrible things done to patients, but at the moment, as the provider, you are the interested individual, and if you can build that trust with your patients, that can help overcome, I think, a lot of structural barriers.