Disparities in Prostate Cancer: Barriers to Access to Clinical Trials - Elisabeth Heath

December 20, 2022

Alicia Morgans is joined by Elisabeth Heath of the Karmanos Cancer Institute in a discussion on disparities in prostate cancer focusing on the barriers in enrolling African American men with prostate cancer in clinical trials. The National Cancer Institute recognizes this problem and has offices of health equity and community engagement in all NCI-designated cancer centers. Heath highlights some of the programs designed to grow and support the infrastructure to succeed in getting patients on trial. These programs include Community Cancer Action Councils on the ground training, workshops, focus groups, webinars, and annual patient-centered symposiums. The importance of trust between patients and healthcare providers for successful care delivery is critical. Patients lean towards feeling like you're doing research on them and not for them and oftentimes don't readily sign up for these trials. Dr. Heath emphasizes that this trust and access have to be earned and sustained to make a long-term impact. 


Elisabeth Heath, MD, FACP, Medical Oncologist, Karmanos Cancer Institute, Detroit, MI 

Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, Massachusetts

Read the Full Video Transcript

Alicia Morgans: Hi, I'm so excited to be here with Dr. Elisabeth Heath. Thank you so much for talking with me today about one of the biggest issues plaguing prostate cancer and actually medicine in general, which is disparities set up by all kinds of pressures. And in prostate cancer, we know this is one of our biggest concerns. Thank you for speaking with me about it today.

Elisabeth Heath: Thanks for having me here. Just excited to talk about a really important topic like this.

Alicia Morgans: Well, and it's been an important topic that you and your team have been addressing, have been passionate about, but really have been actually making a difference in for many years. Can you describe the issue, just I guess sum it up before we tackle how we're going to deal with it?

Elisabeth Heath: Yeah. It's probably hard to do in one sentence other than if you're a practicing clinician and the community you serve has a disparity. In Detroit, it's usually getting the right care to the largely African American population. Drilling down to prostate cancer, you recognize immediately that the disparity is there. Usually it's with access. We hope that that's not the case, but in our world, at the National Cancer Institute Designated Cancer Center, where I'm at, at Karmanos, part of the struggle is getting them on clinical trials. So delivery of care, access to care is one thing, but how do you actually have the infrastructure to succeed in getting patients on trials, and that's how you and I know we advance treatment and sort of improved survival over time.

Alicia Morgans: Well, and one of the issues that really compounds the access issue, I think, is trying to overcome barriers even in communication and in reaching patients in that outreach initially. And in speaking about clinical trials, which are going to be so critical as we try to understand the treatments that we have, the treatments that we're developing, not just in a single population of younger white patients, but the broad array of people that we actually take care of in our clinics. So how do you actually reach patients and then how do you approach talking to them about clinical trials?

Elisabeth Heath: Yeah. I think the good part is the National Cancer Institute recognizes this problem. So there's offices of health equity and community engagement in all NCI designated cancer centers. I think that's sort of a mandate now. So in that sense, I'm really fortunate to work with this office. Dr. Hayley Thompson at our shop has put together everything from community Cancer Action Councils, to on the ground training, to workshops, to focus groups, to webinars, you name it. She looks at a zillion different ways how the community could be educated. We also have an annual symposium that I know you know about. It happens every year, and it's free for the community to get to know us.

Part of the care delivery issue is just trust. So patients always feel like you're doing research on them and not for them. They're not going to really readily sign up to believe you or do what you think is in their best interest. So that kind of access, I think, has to be earned and also has to sustain. So a lot of institutions do a one thing, "Oh, I've done it for the year, and there it is, and it's all good." But it's really multiple years. We've done ours for 12 years. They're always out in the community. You have to, I think, earn that trust and that place in the greater community wherever you are serving.

Alicia Morgans: Wow. I did not realize that it's been going on for so long, and I think that longevity, that continued engagement just hammers home to your patients, to your community, that you're there and that you're not going anywhere. So that's a really important message.

Elisabeth Heath: Yeah. And COVID hit everyone differently. I think when you have a more under-resourced community, it's a little harder. So we know that in 2021, we were fully virtual, got great attendance, but it still caters to a particular population. So we were hybrid this year and we actually offered it up in other locations such as Lansing, Michigan, Flint, Michigan, and we got great turnout. I mean, for what you are after not being in-person since 2019, you have to start somewhere. So it is kind of rebuilding that trust again, but recognizing, now you have to cater in a different way, which is to still maintain a virtual option. I think that's plaguing everybody, honestly, because that's again, more resources.

Alicia Morgans: It is. And it's more challenging sometimes even being there trying to pivot between all these different platforms and ways to engage people. And are we paying attention to this group? Did we hear that group? So congratulations on those forums. I know those are a passion of yours. Something else that is a passion is really making sure that clinical trials not only include a diverse array of patients, but also really understand some of the nuances or differences that might exist in some patients, in some different racial groups even. And I'd love to hear some of your comments on the work that you've done, even in the Abi Race trial and in other trials, where you were looking specifically to see if there were differences between different racial groups who were afflicted by prostate cancer.

Elisabeth Heath: I think the tough part is explaining why you're doing something while they're struggling with their cancer journey. So you're trying to explain the importance. Most of it is, they just have to believe that what you're offering is in their best interest. And I think to do that, I take several steps in ensuring that at least they feel comfortable. So most people are like, "Oh, well they didn't sign up for the first one." Actually, I encourage a lot of my patients to take the consent form home and say, "Go talk about it with your family or whoever is the person's involved in this care journey that you're on. And then come back again." And sometimes it's three, four times. We did research and we actually have a grant that had looked at what do patients say if they're offered? The answer is usually yes. So if you as a physician offer, most of the patients will say yes.

Part of our struggle in getting trials is there's just not enough trials to go around to fit a particular patient population. So most of the time there's no offer because there's no trial. But when offered people say yes. Now is there a racial difference to that? There is. You have to have more trust in the African American community. But that's what you got to figure out about your own place. So for ours, it's multiple conversations. It's to feel no pressure. It's to let that person ask as many questions. I fielded questions from their primary doctor who they trust more, because that person's been with them 30, 40, 50 years sometimes. Whatever it takes, I think is when they feel like, "Oh, she doesn't care if I go on this thing or not. She's offering it. If I take it, wonderful. And if I don't, she'll still provide great care." I think as if that message continues, then that will help.

The other thing I had our team do is implicit bias training. I think everybody's sort of recognizing, everybody comes with some sort of perception, whatever your experience was. Taking actual training makes you feel like, "I'm going to take some active step to really figure out what my own thing is." So having our team do it, I think was really great. And we talk about things. So it's sort of like, "Well, why did that person turn you down? Oh, that person didn't turn me down, but their daughter did. Their daughter had nothing to do with it. Well, why is that? Is it concerns about Tuskegee or other? No, they did a Google search and just found that didn't appeal." So there's a whole nother generation involved now.

I think when we're taking all of our modules, it's the traditional worries about, "Oh, we don't want to do this because of that prior experience and so on." But there's a whole nother generation that doesn't really look at that, but more about our COVID experiences and how has that sort of healthcare delivery or non-delivery occurred in the last three years? That's impacting their decision on trials as well.

Alicia Morgans: Wow. So it is such a multifactorial process. And for those people practicing in community practices or in practices that are maybe not academic in the way that yours is, how should people think about trying to, if they can't participate in the clinical trials, just provide that care in a way that is equal, that is equal in terms of access and delivery and support for our patients?

Elisabeth Heath: I'm often shocked that people don't really even understand the difference between equity and equality. So a lot of the lectures I give to our community groups and Karmanos is the name service line for our 15 hospitals. Actually, I think it's technically 14 in Michigan, so I'll get that right and one in Ohio. But most of it is that's care in patient's backyard. And so that's wonderful and I like that. A lot of folks who practice there don't know that there's a disparity or there's an equity or an equality gap. So educating that sort of, "Guys, here's the problem." And why I care is what is the benchmark standard, let's say. If you say, "Well, what's a win?" I always talk about what does that mean in trying to reduce the gap? If we can get a minimum of 20% of men who are African American or Black in the trial, that's sort of what we think is the benchmark.

So a lot of places are 3%, 0.1%, so that they know where to put that marker. When they start thinking about it in numbers, they go, "Oh gosh, we're really behind." The second thing I always say is, "Individuate your practice." What are the folks saying to you? That maybe what is a barrier to my practice is not a barrier to their practice? So what do they feel can change this narrative? So I always ask them, "Go have a little meeting, even if it's 20 minutes, just what you think can actually make the difference." And everyone's going to have different answers based on where they're practicing,

Alicia Morgans: Really tailoring to the people that we care for, to the people that are caring for those patients that we care for, their loved ones as well. I think your points are very, very well taken. So what would your final piece of recommendation be? And obviously this is going to be an evolution. This is a work in progress, but today's piece of final recommendation.

Elisabeth Heath: Just get started on a conversation. Everybody feels almost overwhelmed with all of these efforts going on. It's sort of the hashtag. It's the, "Oh my gosh, I really have no idea what is happening." Sometimes the question is, "What is happening? I don't understand what is happening. You're talking to me about words like equity and equality. I don't really understand how that really impacts my practice." Just ask. And I think if you start the conversation, you'd be amazed at how the information coming back to you would actually be pretty life changing.

Alicia Morgans: Wonderful advice and something for all of us to work on. Thank you for continuing to be just a role model in this area and moving the needle each day. We all appreciate it and I look forward to seeing where things continue to move with your leadership in this area. Thank you.

Elisabeth Heath: Thank you so much.