Highlighting Bias and Barriers in Urological Care and Prostate Cancer Research - Linda L. McIntire & Tracy M. Downs
May 18, 2023
Linda L. McIntire, MD, Urologist, My Michigan Health, Detroit, MI
Tracy M. Downs, MD, FACS, Urologist, UVA Health, Charlottesville, VA
Matthew R. Cooperberg, MD, MPH, Professor of Urology; Epidemiology & Biostatistics, Helen Diller Family Chair in Urology, University of California, San Francisco, San Francisco, CA
Matthew Cooperberg: Good morning. I'm Matt Cooperberg from UCSF in San Francisco. It's a pleasure to welcome you to another edition of the UroToday Localized Prostate Cancer Center of Excellence, live from AUA 2023 in Chicago. It is a great pleasure to be joined today by Tracy Downs from the Department of Urology at the University of Virginia, where he also holds an Associate Dean position, and Dr. Linda McIntire in practice in Michigan, who are running a very provocative plenary session at this year's AUA, entitled Cultural Complications in Urology. So welcome.
Linda McIntire: Thank you.
Tracy Downs: Thank you.
Matthew Cooperberg: So tell us a little bit about this title and topic and where this journey has come from.
Linda McIntire: Yes. Cultural Complications was actually a course given by the Universities of Maryland and Michigan General Surgery departments, that explores bias on some patient based cases. And after taking the course, I thought, well, we can adapt this to urology to explore implicit bias for patients in urological care. And when we started planning for this AUA convention, the Office of Education and Dr. Denstedt, I gave them the idea like, Hey, we can do a plenary session on uncomfortable complications and went through what my idea was and later they said, yes, come up with the cases and let's explore healthcare barriers for certain marginalized groups and move forward. And Tracy helped me a lot in getting the patient cases together and we assembled a team and here we are.
Matthew Cooperberg: Tell us a little bit about some of the cases.
Tracy Downs: The cases really are pretty much the gamut of using the rubric like we would in diversity, equity, and inclusion. So we've got a case that looks at gender and how women aren't having great outcomes around hematuria workup. And so we know those nuances around who gets a complete workup, who doesn't, but there's some things behind that, from how we gender women in health and in society, and then how those come to play. And so just like we want to be precise in terms of how we deliver new molecular kind of targeted therapies, we want to also be as precise in how we interact across with our different patients.
Some other ones we have, of course, are prostate cancer one. That'll be near and dear to your heart and we're looking at why clinical trial enrollment is not as robust as we'd like to see with African American men. And then a few other ones we'll touch on religion, how to interact with our Muslim patients and be respectful. That's always a really challenging one in terms of urologists, or genital urinary exams. And now add on that complexity of gender, religion, cross-cultural things that many of us maybe have gotten some exposure to, but not a whole bunch in our years and years in training.
Linda McIntire: Right. And the one that I'm most excited about is exposing our attendees with a transgender patient and really discussing the healthcare barriers that our transgender patients face. And that's important because as we move along, we need to be educated as urologists, as how to best take care of these patients in the most culturally competent way.
Matthew Cooperberg: I can't help making a plug on that note. One of our residents actually, Farnoosh Nik-Ahd has a podium at this AUA and a paper coming up very soon, looking at prostate cancer in the transgender population in the VA system-
Tracy Downs: Interesting.
Matthew Cooperberg: -which is not something anybody's really thought about beyond case reports to this point, but there are thousands actually.
What do you think are the most actionable take homes from this? In other words, we talk about these issues and these barriers. What are the most powerful take homes that you're hoping the audience is going to bring away from this? Things to bring straight back to practice?
Linda McIntire: I think one of the biggest actionables is examining your decorum in certain situations and really thinking, maybe I could change the way that I approach this in order to elicit a better outcome for this particular patient. And I think also is providing patients with resources, realizing that there may be limitations that you have as a provider, but you may be able to provide this patient with resources. And I think that those things, as we examine ourselves as physicians and try to be better providers of care, that patient by patient, we can help eliminate healthcare barriers by taking an extra step.
Tracy Downs: Yeah, and I'm so glad that Dr. Mcintire's kind of really birthed this plenary, and for several reasons, I think I maybe might be a little older than both of you, but I think about how the evolution of surgeons, you could be a good surgeon, maybe not a great person, not have great bedside manner, and we've hopefully in 2023, there's a very small or subset of individuals like that. The next layer or level or tier is really how being efficient and effective, is probably a better word across culture. So it's not just good enough to know the data, but the delivery and how to deliver it. And this next generation, I mean when you think about things like maybe terms, we would've said this isn't your dad's urology, right? We should be saying this isn't your mom's urology down the road. But I really do believe that as we see things like transgender patients who are in the ER. What do you do? You're on call. Maybe you've been in practice for 10, 15 years. We need to be retrained.
Not only from the physical interaction of not causing harm from very delicate reconstructive surgery, but also not causing harm in terms of how we misgender or treat people with disrespect.
Linda McIntire: Right. And the other part to that is this is a changing nation, right? We have more transgender patients, we have more Muslim patients, we need to take better care of women. So as our nation changes and we need to change, we need to evolve and grow so that we are able to provide better care and again, address the healthcare barriers that exist for marginalized groups, so that we can improve the quality of care that we deliver.
Matthew Cooperberg: This being the Prostate Cancer Center of Excellence, let's talk a little bit about the prostate cancer example. I've always liked this three-phase framework for disparity research, where phase one is you identify there's a problem, phase two is you try to figure out why, and phase three is to address it. And it does feel like we were stuck in phase one for a long time with prostate. Everybody's recognized the mortality disparity. It's only recently that we've seen better papers, I think, digging into the why questions. And then of course, what do we do. So I'm curious what you think is, what is the most actionable things we can be doing in 2023 to address prostate cancer disparities specifically?
Tracy Downs: Yeah, I think and keeping in line with this plenary-
Matthew Cooperberg: Yeah, yeah, exactly.
Tracy Downs: -around clinical trial enrollment and Dr. Cooperberg, this really hits, I think home when I, we've all probably published a fair number of papers out of SEER Registry, it came about I think as 1973 or 1978. At that time, prostate cancer death for African American men, two times worse than for white men. The same. The same. So we can pat ourselves or not pat ourselves on the back that we're up to almost a 30-year anniversary of being no different. So I think around the clinical trials, we need to have community partners. So I know that Dr. Washington at your home institution is looking about community engagement. And so by the time we want to enroll people in the clinical trials, it's too late. So if you don't have good community outreach, if you don't have trust, if you're not a known entity, usually looking at things that most urologists aren't actively engaged in around blood pressure screening, diabetes, all those things that are relevant in African American communities and others as well, then now when you roll out this new phase three or phase one trial, you're not going to do well.
And maybe one other point too, and this I would stress from a paper that Sean Fletcher, when he was a med student at Harvard, talked about. He's now a resident at Hopkins. He looked at geographic disparities and of course the bigger, some states like a Georgia, New Jersey have higher density of African Americans. For us to do clinical trials that do not have those sites and principal investigators involved, it's almost like adding fuel to the fire about why we don't have enough people enrolled. And then when you now randomize and you know these trials better than-
Matthew Cooperberg: Yeah, of course.
Tracy Downs: -than I do for sure, our grand sum total of knowledge is on a hundred people worldwide. And so we just need to go roll the clock back and really be as committed to doing this well, from even before we start to come up with what the study design is.
Linda McIntire: Right. And it's about doing the right thing for the patient and offering patients with advanced prostate cancer an opportunity to participate in clinical trials. But it's also about the quality of the data that we act on. Is that data really without structural racism or implicit bias? If we don't have diverse groups of people participating in clinical trials, can we really trust it? And so it works both ways. It improves us as scientists and it also improves us as clinicians when we are inclusive for all groups. Latinx men as well, to be part of clinical trials.
Tracy Downs: Yeah.
Matthew Cooperberg: Wonderful. Any other take homes that you want us to?
Tracy Downs: Yeah. First, Doctor, thanks for the opportunity for us to share our excitement about this plenary, thanks for the AUA and what feels like really a seismic shift.
Linda McIntire: Yes.
Tracy Downs: Not a tsunami, right? We don't want you to think about these efforts in that way, but it is indeed. This is not the AUA that I started going to. And so for us to be having these conversations, we see it and who is presenting, we see it in terms of representation across not only our prostate cancer panels not being all male, or not being all one kind of homogeneous group. That we start to show our talent because it's deep and I think it's a specialty in a field that all of us love and because of the people in it it's nice to see that we're starting to show that full fabric of urology.
Linda McIntire: And for me is deepest gratitude to Dr. Denstedt for his encouragement and his guidance in helping us hone in on healthcare barriers for certain groups. And also the cooperation between the younger generation. We have an excellent group of panelists that took this to a whole other level and they were excited about it, and I am excited about that too. Like Tracy said, I never thought that I would see this day in urology, and I'm so excited that we were given the opportunity to really show our talents and make a difference in this AUA.
Tracy Downs: Yeah.
Matthew Cooperberg: Wonderful. It is a seismic shift, right? I mean, the conversations that we're having, the way we're having them-
Tracy Downs: Yes.
Matthew Cooperberg: -the visibility. This is not something that we would've been doing at the AUA in 2000.
Linda McIntire: No.
Tracy Downs: That's right.
Matthew Cooperberg: So thank you for your leadership on this topic and I really look forward to the plenary. If any of the listeners have not seen it, go watch it on the website.
Linda McIntire: All right. Thank you.
Tracy Downs: Thanks, Dr. Cooperberg.
Matthew Cooperberg: Yeah.
Tracy Downs: Yeah. Thank you so much.
Linda McIntire: Thanks so much. Thanks for having us.