Cancer Clear and Simple
Welcome to 'Cancer Clear and Simple,' the podcast dedicated to simplifying cancer. Join us as we discuss the world of cancer, breaking down complex concepts for our listening audience. One of our goals is to equip individuals and families dealing with cancer by providing clear, and concise insights. Through personal stories, expert interviews and practical tips, listeners are enabled to make informed decisions. Whether you're a patient, caregiver, or just simply wanting information, tune in to 'Cancer Clear and Simple' for a easy-to-follow guide on understanding and coping with cancer.
Cancer Clear and Simple
Setting The Stage- UW-Madison's Carbone Cancer Center
The Cancer Clear and Simple podcast, hosted by Joshua Wright, introduces the Cancer Health Disparities Initiative (CHDI) at the University of Wisconsin-Madison Carbone Cancer Center. The CHDI aims to reduce inequities and the cancer burden through research, outreach, education, and training. The conversation explores the underserved populations in Wisconsin, including African Americans, Latinx, American Indian, Hmong, LGBTQ+, and rural communities. These populations face social determinants of health that contribute to lower screening rates, higher cancer incidence, later diagnosis, and higher mortality. The podcast discusses the importance of increasing cancer disparities-related research, both locally and internationally, and highlights the benefits of cancer-focused community outreach and education in rural settings. The goal is to promote health equity, improve access to care, and reduce the burden of cancer for underserved populations. The podcast also emphasizes the importance of trust, collaboration, and patient navigation in clinical research and community engagement. The conversation concludes by inviting listeners to join future episodes and engage in the conversation about cancer disparities.
Welcome to the Cancer Clear and Simple podcast. I'm your host, joshua Wright, community Project Coordinator in the Cancer Health Disparities Initiative at the University of Wisconsin-Madison Carbone Cancer Center. I'm excited to begin this journey as an extension of the work happening in the Division of Population Science and Community Outreach and Engagement. Today I have the pleasure of introducing to you my colleagues in the Cancer Health Disparities Initiative team. The mission of the Cancer Health Disparities Initiative, chdi, is to partner with communities, uw and Carbone Cancer Center faculty to reduce inequities in cancer burden through research, outreach, education and training. The goals of CHDR are to increase cancer health disparities related research conducted by UW faculty and UW CarCarbon Cancer Center members. We also want to implement community outreach, education and program development and evaluation activities with underserved communities. We want to promote increased recruitment of underrepresented populations into UW-Carbon and also provide training and mentoring opportunities for UW-Carbon staff and trainees from underrepresented populations. Without further ado, I'd like to have a chance to let our team introduce themselves, and I would like to start with Dr Ward.
Speaker 2:Hello, thank you for the opportunity to join with you today. As Joshua mentioned, my name is Elise Ward. I am a professor at the university in the Department of Family Medicine and Community Health and I also work with this outstanding team, the Cancer Health Disparities Initiative at Carbone, as the program lead of that unit.
Speaker 1:Thank you, Next I'd like to have Dr Sibeli Carol Barbosa.
Speaker 3:Hello, thank you so much for this opportunity. I am Sibeli. I am a scientist working with the Survivorship Research Program and with Cancer Health Disparities Initiative.
Speaker 1:Great to be here, thank you, thank you. Next we have Ashley Smith.
Speaker 4:Hello everyone. I'm Ashley Smith. I'm an RN and the Rural Outreach Specialist living and working in northern Wisconsin.
Speaker 1:Awesome, awesome. Then we have Ana Karina.
Speaker 5:Good afternoon. I'm very happy to be here. So my name is Ana Karina Cuellar-Montes. I'm a social worker and I'm the Outreach Patient Navigator in Southern Wisconsin. Thank you.
Speaker 1:And then we have wonderful Lucretia Good afternoon.
Speaker 6:Thank you for the opportunity, Joshua. My name is Lucretia Sullivan-Wade and I am Patient Navigator with the Carbone Cancer Center and Outreach Specialist with Carbone. Thank you for this opportunity.
Speaker 1:Excellent, excellent. So what I wanted to do here is just go through and ask a couple questions of each of you that will help just give an understanding of the scope of our work and the things that we get to do. So back with Dr Ward, from your position, what ways are certain populations being underserved along the cancer continuum?
Speaker 2:Oh, thank you for that question.
Speaker 2:That is just such an important population, and I will start out by saying that the underserved populations that we're seeing here in Wisconsin includes African Americans, the Latinx community, american Indian, hmong, lgbtq+, as well as rural communities, and we have representation from all of those communities working at CHDI, so you will hear more from them in those areas as well.
Speaker 2:Recognizing that these populations are considered underserved in the context of social determinants of health, which includes five domains economic stability, education access, healthcare access, neighborhood and environment, as well as social and community context. And so when we think about underserved communities and sort of what that is about, the social determinants of health are just so important in helping us to really understand the context. And with that, then we also have epidemiological data regarding these underserved groups that indicate we're seeing lower screening in those populations, then higher incidence, if you will, and then, when they are eventually diagnosed, diagnosed at a later stage, and we're also seeing higher mortality in those populations. So that's sort of the broader context to think about who represent these underserved populations and some of the social determinants of health issues that we're seeing that we need to be addressing.
Speaker 1:I'm very excited to get into that, as we, you know, continue to have these conversations in this space, so I'd also like to know what kinds of improvements do you want to see through your work and the area of focus in the cancer landscape?
Speaker 2:Thank you. Another important question here, as I started talking about social determinants of health, I think the goal really should be, or what I'd like to call the ultimate goal, if you will, is increasing health equity for these underserved populations. So how are we doing that? Through CARBON, by our CHDI, which includes all of us in this talk right now is sort of recognizing that in the work we do. Recognizing that in the work we do and this may be a bit of a replication of what was mentioned earlier, but I'm a psychologist and a professor and I know that sometimes replication or hearing the same information can be good in helping us to sort of really remember the information and then be able to act on the information. So how are we wanting to move these work forward through CHDI is recognizing that we employ a community-based Advocacy Board that we have, that we formed three years ago, and that group comprised of African-Americans in the African-American community, be it a patient going through treatment at this time, a survivor caregivers, if you will, or care partners of people who are going through the cancer care continuum, as well as community stakeholders. And oh, don't forget, we also have representation from the faith-based community as well. So that is one sort of concrete example of how we're working with the community to better understand their needs. That is geared towards trying to improve access, if you will, education access by way of better understanding about prevention care and clinical trials as well, because we need to see better engagement in clinical trials, if you will. So that was one concrete example.
Speaker 2:Another concrete example is another CAB. We have the Central CAB at Carbone and we have representation across the different underserved groups as well as our well-to-do groups in Wisconsin, and that is the white population, underserved populations that I've mentioned earlier African Americans, american Indian, lgbtq and the Hmong. So that is also another CAB that is focused on informing CARBON leadership, carbon researchers, carbon clinicians about the needs in their community, to make sure that we are addressing those needs with the goal of increasing health equity and quality of life, reducing the burden of cancer in those communities. I hope I answered that question for you.
Speaker 1:Yeah, you did. I really appreciate everything that you were doing to walk us through what the scope of our work entails, and so thank you so much, and I'd like to turn to Sabeli and ask her a question. And so what does increasing cancer disparities related research look like in the work you do with UW faculty and Carbone Cancer Center members?
Speaker 3:Thank you for the question, Joshua.
Speaker 3:So increasing cancer disparities related research means that first, we acknowledge that there are communities, there are populations, as Dr Ward mentioned, that experience a lot of problems in healthcare and these problems are mainly due to socioeconomic inequalities, which will end up translating to worse health outcomes, higher incident rates of cancer, higher mortality rates.
Speaker 3:So in my work I support Cancer Center faculty members in assessing, understanding, measuring what are the problems that these communities and populations are facing. And this assessment and the research is always in the context of trying to think about more than identifying the problem and measuring the problem. We want to think about strategies and solutions that can mitigate, decrease the problems that are driving these worse outcomes. So if we go to the community to assess what are the barriers and facilitators to have a mammogram screening, for example, we always think about. If we identify an issue about education on recommendation or education about risk factors for cancer, we always think about going back to the community and translating this into an educational intervention or something that we can do to mitigate the barriers and improve the outcomes for the community.
Speaker 1:Yeah, thank you so much for that explanation. I really appreciate that. Can you also share about the importance of cancer disparities research at an international level?
Speaker 3:Sure, Just to give a little bit of context, I think we're talking about this because of my background as a physician in Brazil. So being able to have this experience showed me that all the progress that happened over past decades in cancer care it happens, it is. It happens more often in developed countries, so it doesn't arrive in the same speed and at the same pace in lower and middle income countries. So what happened in a lot of places is that people are still having higher incidence rates of preventable cancers, People are still being diagnosed in advanced stages and people have less access to effective treatments, which will end up in worse survival outcomes. So research addressing, I think, involves a lot of collaboration and working together to build infrastructure infrastructure to improve cancer prevention, access to treatment and also build capacity for research in certain areas. I hope that addressed your question.
Speaker 1:Yeah, it really does. Thank you so much, and I appreciate you pointing out that the reason why I asked you that question. I don't want to be kind of hiding things, but that's exactly it. I really appreciate you putting that out there. Next I would like to tap in with Ashley. Can you talk about the positives of having cancer-focused community outreach and education in rural settings?
Speaker 4:Yes, thanks for the question, joshua. So, like everyone on the call, I'm really focused on looking at outreach and engagement through the community lens. So when we're working specifically where I am with the American Indian community, looking at you know, partnering so that things are culturally competent, that we're building trust with the community so that there's more meaningful collaboration, working from the beginning, for example, working with the tribal health center staff, involving the community as active partners. I think it makes the interventions more effective at reducing disparities because the community knows best and so following their lead has a more positive impact, I think, in being able to enhance the relevance of the work and being able to disseminate the information more meaningfully. Powwow events, working with monthly events with their tribal elders at their elderly center, doing nutrition education classes with indigenous foods and utilizing the Pink Shawls initiative, which is aimed at creating awareness and education around breast cancer. So hopefully that's just a little taste, but hopefully that answers your question.
Speaker 1:That's just a little taste but hopefully that answers your question. Yeah, we want to give teasers here in this space because we want people, to you know, feel comfortable and confident tuning in about what information is to come. So that was great. Also, what positive changes would you like to see for rural communities?
Speaker 4:when they are facing cancer experiences.
Speaker 4:I mean, of course, when I think of positive changes with cancer, I think of reducing the cancer burden for rural folks and addressing the disparities, and so I ended up formulating kind of a wish list here of things that I feel like we're just scratching the surface.
Speaker 4:But transportation is still a big concern in rural communities and so having a more consistent means of getting folks to their cancer treatment, being able to have transportation for folks that don't have it. Increasing early detection In the northern communities where I live, the most common cancers are breast, lung and colorectal. So we know, with early detection and access to screening, we will have better outcomes. And so, looking at you know, in a perfect world, increasing mobile unit access for mammography and lung cancer screenings, I think. Increased partnerships with community health workers, which we already have here with our local tribes and FQHCs but I think that is another area that could be explored and utilized more fully. Continuing to nurture community partnerships and, looking at you know, helping to educate the larger community about cultural competence in terms of partnering with our American Indian communities. That's a good start. If we could achieve any of those things, we would be on the right track, joshua.
Speaker 1:If we could achieve any of those things, we would be on the right track. Joshua, yeah, and I really like being able to just understand that. This is just one way that we're approaching it, through kind of this podcast conversation type of feel. But you know, we want people to understand what's available to them as ideas and just bring more and more people along, but also as you're pointing out very clearly, saying, hey, what is it that we need to do with you all? What is it that we can support as ways of being able to get to that point? So the wish list is just right on point. I really appreciate that. And then I like to turn to Anna Karina what kinds of benefits do programs provide to underserved populations that you work?
Speaker 5:Yes, good question, joshua.
Speaker 5:So the benefits that programs provide to the underserved population is to help to reduce the emotional stress and the financial burden that they can experience. So, depending on patients' needs, some programs can help people with transportation, health care costs, lodging rent, food, insurance assistance and other needs. So, under subpopulations, many times if they face additional challenges, for example work reductions or if they lose their job, this can, you know, lead to both insecurity and also the inability to pay rent utilities, loss of health care. So, even before you know, talking about a screening, it's important to help people to get into services or programs that they need at the moment. So, for example, many times, referrals to local food pantries, free clinics, child care is very important, local food pantries, free clinics, child care is very important.
Speaker 5:So once these needs are met, then they will take care of their health and then when we'll go to their screening and follow up tests that they needed so many times, you know, programs can help a little bit with these issues that they experience, and also I mean people with cancer. They experience, you know, a reduce of work. Also, they can lose a little part of their salary and they still have to pay, you know, for rent bills, car payments and all these In addition with the cost of the cancer treatment. So all these programs can help them to, you know, help them a little bit to get into their care that they need and just elevate a little bit all these other things.
Speaker 1:Yeah, that is very well put. Just digging into what's before, even just understanding what it takes to access the things that people need when it comes to cancer, and so this might be a little bit of the same. But what progress? What will progress look like in cancer disparities and how the community is being served? Help me understand, from your perspective, what that looks like.
Speaker 5:Yeah, well, first having more attention paid to the non-medical factors that influence health outcomes. So addressing the social determinants of health appropriate is the first step to making progress. So progress in cancer disparity with the underserved communities, so progress in cancer disparity with the underserved communities that is being served will be, you know, seen by equal opportunities to go through the health system, reduce gaps in insurance to get services. Also eliminate discrimination and bias and access to resources that they need. Also, what I mean with increased access to care is not just the treatment but also to prevention, because of the preventive screenings to catch cancer and early stage is very important.
Speaker 5:When I go to, you know, to events to educate patients, I want to do the education so they can go to their screenings and even they, you know, help the patient's schedules, especially for the ones that they were hourly and they not get paid for that time off. So access to screening in times, you know, evening times, even weekends, I think that will help. And also, you know, like providers have the ability to provide culturally and also linguistically appropriate care will be very important too, and the diversity of the healthcare workforce also will may help to address these health disparities. So I think that's some of the things that will help to you know. Get into the progress in cancer disparities.
Speaker 1:I'm just really I keep on saying excited, I'm enthusiastic, I'm all of these things even more with hearing and just being able to work with each of you and everything that you're putting forth and pulling forth are right in alignment with the things that we want to get into and really dig into when it comes to being in this space and having this conversation. So, thank you, thank you so much for what it is that you just put forth, and also I'd like to hear from Lucretia. So, lucretia, we here and I'd like you to be able to talk about or describe what. Promoting increased enrollment in clinical research for underrepresented populations all these long words, but what does that look like for underrepresented populations in your work?
Speaker 6:Well, joshua, thank you for that question. That's a noted question and I will try to be brief in answering it, although it is very difficult to be very succinct in answering that question. But, first of all, we know that clinical trials are important and we know the importance of being a part of a trial, clinical trial and we cannot for me, and I hope I'm answering your question correctly we cannot begin to service our community or be a part of our community without acknowledging the history and the abuse that the underrepresented when I'm speaking of the African-American community that I'm working with have experienced when it comes to research. So, first of all, in order to build the trust and the relationship with the community and the importance of the clinical trials, it's important to help them to understand the reasons why some of the treatments aren't working, for maybe their cousin or their aunt or their mom or their dad when they went through for treatment is because they were not a part of that clinical trial, and to remove that thought, that you can remove the thought, but it's still there. But we want to do better that society has opened up to, in doing better and acknowledging we can't go back, but we can make things better.
Speaker 6:So part of my role in what I see as far as for clinical trials is to educate our community, partner with our community so that they have a better understanding. And, most importantly, you have to build a trust. If you don't have trust in a relationship with the community, you can't expect them to be a part of the clinical trials and helping them to understand what a clinical trial means, what that means. It's just like we know, like I would say, I may want to be a size 7, but I'm a size 20, so a size 7 wouldn't fit me. So the medication for a person is specific to that particular ethnic group, that particular disease and the importance of helping them to understand that ethnic group, that particular disease and the importance of helping them to understand that.
Speaker 6:So I hope I'm answering your question, the way that you look, the response that you're looking for, because, most importantly, I feel that you have to have a relationship with the community in order to even start the dialogue. And once I build that relationship, once we build that relationship and partnering with them, because I believe in a collaborative model and I believe that it's important that we come together as a collaboration the universities, the hospitals and I think it's just a great opportunity and to help our community, the underrepresented populations that we've spoken of, from Ashley to Ana Perina and even Dr Sabeli, that we were not a part of that. But we want to be a part because we do want to take care of our health and we don't want to always be a part of the social determinant of health. We want to remove those barriers and we want to have the access and the care that's available to all.
Speaker 6:That answers your question.
Speaker 1:Yeah, yeah, you're hitting it right there. And when we're thinking about trust and collaboration, those are the precursors, those are the necessities in order to be able to get people in the door. So that's right there. That's right in alignment with where the question was wanting to go. So, also, I'd just like to hear about what is a highlight in your experience working with communities while focused on cancer health.
Speaker 6:Again. Once again, that's a wonderful question, joshua, thank you for asking that question. You know I could talk about patient navigation all day, as Ana Karina knows of patient navigation. First of all, I think that it's important that people even understand the history of patient navigation, where it came from. It came from Dr Harold Freeman, african-american breast oncologist in New York, and his reason for having patient navigation. It continues to build for our communities, that we need to have it for our patients, and I hope I'm answering your question because I don't think it's.
Speaker 6:Whenever I talk about my role and talk about patient navigation, I feel that it's important that you acknowledge who started it, who recognized that, the importance of having that there. And, as Ana Karina talked about, there are barriers that people may not be able to make appointments. It may be the times that the appointments are scheduled do it like a nine to five, but we work nine to five. You know we have to take off. Other individuals take off and may not be paid. So the highlight for me is to share, when I'm working in a community about patient navigation, why patient navigation was established, the importance of patient navigation. You had patient navigators. Now you have nurse navigators because we need someone to help us to move those things along and to help us to identify the barriers and to work together to become a part of that health care team. So I hope I'm answering your question. I was trying to type it as you had sent us the questions, but I think I may have missed a little bit. But I think the highlight for me is when and it's not about me, because I don't believe that it's about the person, it's about the work. I think that I just like to always give kudos to Carbone Cancer Center for acknowledging that there was a need for the role of patient navigator for the underrepresented within a carbone through the CHDI program and that they reached out to the community because they saw that there was a need and that, with Carbone Cancer Center being an NCI center, this is just great for Madison residents to take advantage of. This is just wonderful to be a part of NCI Cancer Center. And I think the other part is for the community to see that Carbone, they care about the community.
Speaker 6:And for me the highlight is when I'm able to. It's not, like I said, it's not about me, it's about the people that I work with and the individuals who are doing the work that I'm able to share relationships and partnerships with the community that they feel comfortable and now that through Carbone, we could be out at events and individuals are like, well, they have someone at the Carbone Cancer Center that they could do this and they have the team that could come out and they can talk about cancer health information for you and to share. That could come out and they can talk about cancer health information for you and to share that. So that's a highlight for me. And a highlight is when I have an opportunity to work with patients and family members and when those family members take me alongside with them and let me walk with them with that journey with their family members. That's a highlight is because it is a privilege and I consider a privilege, it is an honor when I have the opportunity to do that type of work with the community.
Speaker 1:Yeah.
Speaker 6:I hope that answers your question.
Speaker 1:Yeah, everybody's doing a wonderful, wonderful job, being able to just let us know, get it, get, pull us a little bit into what it is that we're seeing and understanding and being able to do on a daily basis through this types of work. And so just hearing about how you value the foundation of where it started is important and important to you, and that's exactly what I wanted to hear or help others get a sense of. And so I just wanted to kind of wrap up a little bit that you know we have also the opportunity to provide training situations, so when people come and ask questions to us about cancer disparities, we're able to bring them into our worlds and show them and bring them into community spaces so that they can open their eyes and see what the values are and see how much of an asset that people already are having when it comes to their own health and being able to get them on board with what they're framing and what their life experience has to offer. And when we do that, you know people are all the more keen on asking better questions when it comes to setting up research projects or being able to, you know, publish papers or things to that of that sort One thing that I also liked as well as we get a chance to work with students, and when I say students I'm meaning youth from high school age all the way up through, you know, professional students and things of that nature.
Speaker 1:And so when people have come to the staff of CHDI in the past, you know it's like, hey, you know I had this idea, and it's like, yeah, that idea is great, let's see if we can do a literature review and from there be able to, you know, publish your idea in the kind of greater journal sense.
Speaker 1:And so those are just some of the kind of examples of things that we get to do when it comes to training and expanding that familiarity with what it means to work with populations that are underserved. And from there, ultimately, I want this podcast to explore cancer topics through the perspectives of people that are affected in communities. We also want to tap in with experts and supporters of the journey, so anybody who has experience, we want them to be able to share here in this space on this podcast. We do have a genuine desire to make this conversation relatable and accessible for those that need it the most, and so we value your time and appreciate your willingness to engage with us. We want to take this time to thank you for joining the Cancer Clear and Simple podcast. Please tell your friends, families and loved ones to tune in and we'll catch you on the next episode.
