Episode 7, Part 1: Health Disparities and Cancer

[0:00:00 Speaker 0] is we realize it’s not a one size fits all model and that we can’t just put our shoe on everyone but understanding that that support has to be delivered in different ways that meets the populations where they’re at. Then I think we’ll do a better job empathy and connecting with our patients and our communities.

[0:00:19 Speaker 1] We’re a resource for learners, including every member of the live strong cancer institutes on track, Educational pipeline, from middle school to residency were growing collection of interviews, talks and experiences the uncover the myths and the uncertainties of cancer and careers and cancer in order to empower and inspire generations of thinkers and leaders. This is cancer uncovered, uneducated, in and empowerment podcast by the live strong cancer

[0:00:49 Speaker 2] institutes. Hello, This is Kristen Win with the live strong Cancer Institutes and Emerging Academic Cancer Center at Del Medical School at the University of Texas at Austin. I am here on cancer uncovered an education and empowerment podcast, kicking off 2021 with a very powerful start, uncovering health disparities and cancer as a cancer center where the mission is to reinvent cancer care. Addressing disparities is a monumentally important part of that work. I had the enormous fortune of sitting down to talk with two experts in community based cancer research and patient advocacy. Dr. Lillian Noelle and Dr Sanford James. I want to jump right in to this important conversation, having everyone introduced themselves flush out the definitions of health, equity, health disparities and other key concepts. And then how all of this pertains to cancer care and cancer research and what we can do from here, Dr. Noel Per Dr James’s recommendation. We will have you go first. Of

[0:02:17 Speaker 0] course. Right. Thank you. So funny. This is why I love working with him. You see

[0:02:23 Speaker 2] why I love

[0:02:23 Speaker 0] working with him? So I am Dr Lillian Noelle and I actually work at the University of Texas at Austin. I am on faculty at the School of Social Work, and I also have a courtesy appointment at the Livestrong Cancer Institute in the Department of Health Social work at Del Medical School. I am mostly concerned about increasing the number of people from marginalized communities and care for cancer. And those marginalized communities could be defined by race, ethnicity, rural versus urban environments, socially isolated environments, homeless. LGBT Q. I’m just interested in making sure that cancer care services is available for all communities, regardless of someone’s disposition. And so my research I get out into the community ideo community based research and my research is rooted and grounded in partnering with community. So I worked with communities to divine the problems from their perspectives and what they need. And then I try and help fill those gaps for them by connecting them with the services that they might need or providing some type of research direction to help connect them with care. That’s generally speaking, I guess. Is that okay, Sanford, you’re looking e

[0:03:43 Speaker 3] think that’s excellent and I think your work is really phenomenal. I am Dr Sanford James and I actually on the faculty at Houston Tillerson University, a historically black college here in Austin, Texas, in the social and behavioral sciences where I actually teach history classes, US history, world history and, of course, African American history. But I also coordinate a health science program at East Side Early College High School here in Austin. I’m really excited. I’m their chair elect for the Esco Health Equity Committee, and I’m pleased that the Conversation on Equity now has become even mawr desire by a lot of people. My research area is very similar to yours. Lately, I do community based research. Most of my work is as a community based researcher, particularly focuses on community engagement, around organization, recognition of community based organizations. I do work with faith based organizations as well, and what I’m trying to do is really provide MAWR awareness to these organizations of Resource is. But I also wanted to collaborate, work with academic researchers Lilia like yourself to help connect university academic researchers to community based organizations who are already doing a lot of intervention work. A za cancer researcher myself, I really try to focus on cancer prevention from the standpoint of lifestyle behavior changes, and I think that’s something that can really help the areas of disparities as related to cancer. So I’m looking forward to our conversation today to really learn more about how we can work together

[0:05:29 Speaker 2] now on to some clarifications and definitions from terms you’ve likely heard health disparities, health equity, vulnerable populations and marginalized populations. Both Dr Noel and Dr James felt it was important to really set the foundation for listeners on these really important terms, So everyone was on the same page. It also brought up some really great conversations along the way.

[0:05:52 Speaker 3] I’ll go first. This time I wanted to find health disparities, and I really love the definition. Lilia from the C. D. C. They talk about health disparities being preventable differences, preventable differences in the burden of disease. And as relates to cancer, that really gets me excited because that’s the type of work that I focus on. I really believe that cancer prevention truly addresses disparities and so that the levels of mortality, the incidences of cancer those areas will actually, I think, will be reduced if we really start looking at ways to prevent people from getting cancer, irregardless of race, color, social economics. So health disparities to me is preventable differences in the burden of disease as it relates to any area. And I like the CDC definition, and I

[0:06:50 Speaker 0] would totally agree with that. And I can dovetail on that and and talk about health equity. Because while health disparities look at preventable differences in disease, health equity addresses the point that it’s not a one size fits all model, right, and so a lot of times when we think about providing services of care, we think, Wow, we’ve got these great treatments and we’ve got these great prevention messages and well, we’ve told everybody, don’t smoke exercise, you know, do these things. But that’s not taken into consideration the systems that people live within the communities that people live within and there are other What, you have a good word on here? Intersectionality, Right? There are other things that are intersecting with the ability to be able thio provide interventions to help with preventable differences. And so equity is everybody should have access to the services that air needed. But not everybody does. And you can’t assume that I’m How can I explain this? I cannot explain better with an example if I could give an example when hurricanes happened, right? So you think about the fact that, like when the hurricane hit Houston and you had a lot of people who were displaced, they sent aid. But the aid didn’t get to all of the neighborhoods in the way that they needed to receive them. You can’t assume that you could send the same amount of money toe one neighborhood that you’re going to send to another neighborhood that’s gonna be okay. They’re gonna be able to recover because they’re not right. So they needed in different ways. They also need some flexibility on how they use those funds. Maybe they need to use the funds for recovering businesses. Maybe they need to use the funds for housing or something like that. So equality, health equity involved looking at where we need to provide resource is in order to help people having a negligible chance.

[0:08:45 Speaker 3] Next,

[0:08:46 Speaker 2] we wanted to break down the difference between vulnerable populations and marginalized populations. Dr.

[0:08:53 Speaker 3] Noel, I’m

[0:08:54 Speaker 2] gonna take

[0:08:54 Speaker 0] a stab at it. But please, Dr James, jump in, please. But here’s the way I see it, I think it’s perspective. It’s the way you’re looking at it. So to me, marginalized means something is happening to them. They’ve been marginalized. Vulnerable is that they are in a position to be affected by social determinants in an exponential way. Because that intersectionality right, they’re already experiencing other forms of distress. And so they’re already in any particular position where putting mawr social determinants on top of them and putting cancer on top of that will just accelerate the problem right, whereas marginalized means that something is being done to sort of push them to the edge of the theme. So we’ve got, like, good treatments happening, but somehow they’re marginalized and they’re not able to take advantage of those treatments. That’s how I see it.

[0:09:55 Speaker 3] I agree with you, especially around marginalized. I tend to believe marginalized are those groups of individuals, particularly as it relates to cancer care. These air groups that are, you might say subcultures or for gotten. And I’m reminded of a conversation in my health equity work with ASCO. I’m a part of the sexual gender Minority task force, and one of the things that we’re doing now is we have put together a survey. The link is actually asking cancer researchers, particularly The focus was on oncologist, and I push the committee to expand it out to include supportive services for those populations. When I say populations individuals affected by cancer marginalized groups of l G B T. Q. I A. These groups that survey asked oncologists, How do you actually approach cancer patients who may identify themselves as L G B T. Q. I. A. And the reason we asked that question. We know that on colleges are not asking and the reason we asked that, because the research has shown that you said it marginalized groups. The optimal care is not truly given because they are unafraid to reveal their sexual identity, which does in fact affect their cancer treatment. And you think to yourself, if it oncologist is treating someone, whether it might have breast cancer, prostate cancer, liver cancer, it doesn’t really matter if this patient does not feel comfortable within the setting. The cancer care is not going to be the best care. And the other reason we asked that question. How many oncologists are uncomfortable with treating ah person who might be identify themselves of a gender That’s not the biological agenda that they were born with? And so it’s just I love your definition. And when I think about marginalized, I think about the expression. Just stay in the closet. I don’t want to hear you because that makes me uncomfortable. I’m sorry, can you hear that?

[0:12:19 Speaker 2] We did actually here that Dr James Ah, side note for the audience. Dr. James is a dedicated educator at East Side Memorial Early College High School, where they were releasing students as we recorded this podcast. Carry on, Dr James.

[0:12:34 Speaker 3] Vulnerable populations. We have acknowledged it, but we haven’t identified marginalized. Next

[0:12:42 Speaker 2] onto the reason we’re here, I will let lay Leah kick off this discussion.

[0:12:47 Speaker 0] Why are we talking about this on a cancer podcast? I’m going to tell you if you look at breast cancer, an African American woman has a 42% greater chance of dying from her breast tumor than a white woman with a similar tumor tight. And that that changes depending on where you live in the country, it could be 68% in one part, and it could be 71% in, you know, you go out west and it could be, you know, 75%. So it’s gonna depend on where you live, like in Houston. You know, I believe it’s 71% from Houston. If I’ve been visualized my chart, don’t hold me to that be. I’m visualizing when you chart in my head. If you look at that, M. D Anderson, which is one of the best cancer centers in the world and right outside their door, an African American woman has what I believe is a 70% greater chance of dying from her breast cancer than a white woman. This is why we’re talking about this in cancer because we can look at prostate cancer, we can look at cervical cancer, We can look at lung cancer, we can look at any other type of cancer, and we’re going to see a disparity that is a preventable difference on and and that is why we’re looking at this. And I also want to give a shout out to live strong, too, because when I came in as a visiting faculty, the live strong administration doctor Eckhard administration, just for like, we’re so excited because we want to know how toe address thes gaps in service delivery to our communities. And that’s why we do this. That’s why we’re looking at it in cancer. Another reason why we’re talking about this on a cancer podcast is that that it takes more than just the cancer community to address social determinants of health and health equity, and so communities are in need. They have needs, and they are partners in this. And so we are just one team invited to the table But we also need to make sure that we have teams from other disciplines and the community and leadership at the table so that we’re addressing the social determinants that are posing challenges to us being able to prevent disease

[0:15:07 Speaker 3] difference. I want to bring up a similar point. Why are we talking about this? And I’m reminded of studies and prostate cancer that was done among African American man who are military veterans. And so the V a health care system means that every veteran has access to the services, and the research showed that African American men, when you compare them to white men who actually were diagnosed with prostate cancer, their outcomes were not as good. And so we’re talking about disparities in cancer care because I really believe that we have to acknowledge there are these preventable differences, and I think it goes with an acknowledgement that with African American populations and other populations as well, cancer experience is not going to be the same. And I think sometimes as much as we really look at and and Dr Well, you’ve a very good example, when you talked about equality, we really started thinking If everyone has equal access. Everything’s gonna be fine. But now we understand that it’s not necessarily just to equal access. It goes into also equity. But it also goes into the acknowledgement that the cancer experience will be different for some people. And again, I’m reminded of the cancer support groups. I’ve been a part of us to international my goodness for the last 20 years, and us, too. We continue to have a huge issue in problem with African American men being a part of the support group network. There’s some cities where actually, African American men actually did have a support group, you know, in that particular city. But in certain regions of the country, African American men were not part of the support group, so it’s like any other social action problems. First of all, we have to acknowledge the fact that there is a problem and stop talking around it and actually, you know, really discuss ways to address it. I’m reminded of a definition around health disparities. Again, people are invited to the party. However, do they feel and divided to actually get on the dance floor? And I would ask this question, So are we truly interested in a different outcome, Or are we just saying it? That’s kind of the whole premise of the conversation. Why are we having this conversation? I think we’re having the conversation because it’s an acknowledgment that we need to be having it. And I like that. I’m glad.

[0:18:03 Speaker 0] Yeah. Can I give you an example? From my work in ST Louis, we worked with African American women who are breast cancer survivors in North City ST Louis. One of the things that we heard from the ladies was that the support group sent downtown. We’re not meeting their needs so they wouldn’t go. They didn’t feel like they were heard or trusted their but and so what they needed was a different way of doing support. And they educated us on what that looked like and what it looks like from their perspective. Is there really great at helping each other? They want to be a support system, toe other women in their community. If they’ve had breast cancer, they want to give back to the ones in church. They wanna sit with someone who’s getting chemo because they’ve been there before, and while they’re supporting other people they’re getting support back in return, right? And so it looks different. Support look different, and we had to learn that. So we actually created some support groups within the community that were ran by the women from the community where they could talk about the issues they had they want to talk about.

[0:19:12 Speaker 3] It reminds me of the same thing that I had done when I worked with barbershops and Alabama, and that was a really good programming project through the prostate, net and other avenues and and one of the things that we found out and I’m thinking about myself particularly go to a black barbershop and you sit around long enough and you you might get a haircut. Okay, but you probably get mawr information about everything else. We went to the barber shops, and we want to collaborate with them about health, education, men’s health, through the barbershop, the whole message. Waas. We said, Look, we just want you to at least talk about men’s health, prostate cancer, places to go get screening. And I say it because if you go to a black barbershop, men are gonna be talking about, believe it or not, they talk about their health. We went to the barber shops, we used jazz festivals. And one of the things the focus, which I found was not on the health topic. But it was inclusive in what you just said with the women. They did it the way they did it. And what we found out. The outcomes that Mawr men actually ended up getting screened for prostate cancer. Mawr men actually made an appointment, establish a primary care physician because they would not forced to do it. Because in the past, we would go to the community and yell at everybody and say, You better go get screened for prostate cancer. The man went like, Uh, no, I’m not doing that. One thing that we realized I love what you said about the women. You learned that they’re going to do it their own way. So thanks for sharing that.

[0:21:03 Speaker 2] So what do we do from here? How do we address this and stop talking around it?

[0:21:09 Speaker 3] I’m a strong, strong supporter of Go to the community and learn, And that’s something I’ve said for many years. You go to the community and you sit there and you learn you go back to the community and you sit there and you learn. And I think that’s part of the issue is community based research. Dr Doyle knows this. It takes time. Got to build those relationships. And I think in terms of our structures, we’re guided by the structures that we go by. And the community says, Well, that doesn’t work for me. And so guess what? They’re not gonna work with us if we don’t acknowledge how they’re doing their work.

[0:21:57 Speaker 0] Yeah, I totally agree. As healthcare professionals that provide cancer care, I think the more we recognize that the better will be at providing services again, going back to health equity, my health equity if we realize it’s not a one size fits all model, and that we can’t just put our shoe on everyone but understanding that that support has to be delivered in different ways that meets the populations where they’re at, then I think we’ll do a better job it empathy and connecting with our patients and our communities.

[0:22:28 Speaker 3] Another thing area I would like to bring up is the fact that the acknowledgement that there is not enough persons of color within the cancer feel itself because I know my experience. Many bench scientists, whether you need to talk directly to a patient or not, I think it’s important they understand where these patients are coming from. And so I would really like to see us acknowledge the fact that we do not have a diverse, cancer research based force, and I think that’s something that needs to happen. I was just gonna bring up one fact, and I hear this so many times that okay, we’re going to partner with a historically black college or university and HBCU to recruit Mawr cancer researchers and one of the issues that I have with that is we only partner which HBC use that are research based. And so if we truly want to diversify our research crowd to me, we should also recruit from non research universities so that these potential cancer researchers will actually start to consider a field in cancer research and that, in fact to me it will actually expand it. It expands the awareness that cancer research is a viable option. I would say one thing that I think the audience, whether it might be middle school, high school or even undergraduates, I would say that the audience needs to consider cancer research. From the standpoint of a community based researcher, I would love to see Mawr young people go into community health and public health because that is cancer research. I didn’t know that cancer research could be in all these other different fields. So I would recommend that people really start thinking of cancer research in other areas besides just the treatment based site. And I think sometimes that’s the only not the only. But that’s where most of the focus on is the cancer treatments. We need more educators, nutritionist, social workers. We need more people that go into those fields. In

[0:24:56 Speaker 0] addition to that, I totally agree and that I was gonna say We’re doing it right now because you have the two of us speaking on this podcast. So we’re gonna be speaking to potentially the future generation of cancer care providers and researchers. So that’s, you know, wonderful start and also working with middle school students and high school students ahead of time and getting them, making them aware that these careers are even an option. I know when I was growing up, I just thought in order to improve health care for poor women and Children, I had to be a doctor. I had no idea that there were other avenues. So I think actually, exposing middle school and high school kids to people of color who are doing work in this area is really important. And I really think that cancer institutes and cancer centers need to make a pearl active strategic plan of diversifying their workforce not just lip service, but actually put money behind their recruitment plans. And not just saying, Yeah, we need to do this. What actually doing it, like actually trying to make sure that you’re putting the money behind, bringing in a diverse junior faculty that can mature into tenured faculty. If I can mentor future faculty, I am going to give live strong credit here because they’re thinking about it. And I think that we’ve talked about this earlier in our conversation is that cancer institutes and cancer centers around the country need to be talking about this, and the fact that live strong is a young institute, and it’s already talking about it from the very beginning, and I told you when I came in two years ago, they were super excited to work with me. I think that that is a model for where we need. I know there there’s room for improvement. Obviously, there’s room for improvement. I see that, but they’re new, so they’re moving in those directions. They’re filling their centers now, and I think that’s great. And I think the other institutes and cancer centers across the country should be doing something

[0:27:06 Speaker 2] similar way. Want to thank Dr Lillian Noelle and Dr Sandford James for their incredible contributions and dedication to improving health care, including cancer care, and for taking the time to discuss this on our podcast? In Part, two of this episode will sit down one on one with Dr Noel and then with Dr James to hear more about their background and personal career journeys. If you have questions for the Live Strong Cancer Institute’s Dr Noel or Dr James, please email us at live strong cancer institutes at del med dot utexas dot e. D u. Please make sure institutes is plural and is always please email us to reach out with Mork. Answer questions that we can uncover. You can find out more about the live strong cancer institutes at del med dot utexas dot e d u. You can find out more about the live strong Cancer Institutes clinic at ut health austin dot orc If you enjoyed this episode, please consider subscribing. This is Kristen Win for cancer uncovered. Thank you for listening