Episode 8, Part 1: Engaging Communities to Advance the Quest to End Cancer

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Episode 8, Part 1: Engaging Communities to Advance the Quest to End Cancer

Jun 05, 2024

Community outreach is transforming cancer care for the diverse populations of the Mountain West. Rachel Ceballos, PhD, and Garrett Harding discuss the methods and successes in using this approach.

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Host

Heather Simonsen, MA
Public Affairs Senior Manager
Huntsman Cancer Institute

Guest

Rachel Ceballos, PhD
Investigator and senior director for Community Outreach and Engagement at Huntsman Cancer Institute

Associate professor, Department of Family and Preventive Medicine at the University of Utah

Guest

Garrett Harding, BS
Associate director for Community Outreach and Engagement at Huntsman Cancer Institute

Episode Transcript

Topics by Timestamp

Welcome and Introductions (00:51)

Heather Simonsen: Hello, and welcome to Cancer-Free Frontier...I’m your host, Heather Simonsen, and I’m so glad you’re here with us today. At Huntsman Cancer Institute, we serve the cancer community. But what does community look like across five states and thousands of miles? How do we engage with as many people as possible, even in our most remote and diverse regions? Well, Huntsman Cancer Institute provides care for patients in five massive and largely rural states: Utah, Idaho, Montana, Nevada, and Wyoming.

This makes cancer care and prevention a challenge. And each state and the communities within that state have different needs. So today, we're talking to two leaders who want to [eradicate cancer] through better engagement with the people of this vast and verse Mountain West. We'll talk about what outreach looks like and how they make sure community voices are heard. Rachel Ceballos, PhD, is a researcher and senior director for Community Outreach and Engagement at Huntsman Cancer Institute at the University of Utah (the U), and associate professor in the Department of Family and Preventive Medicine at the U. Our other guest, Garrett Harding, BS, is the associate director of Community Outreach and Engagement here at Huntsman Cancer Institute. Rachel, Garrett, I'm so excited to have you both here today in the studio. Thank you for coming.

Garrett Harding: Thank you for having us.

Rachel Ceballos: Thank you.

From personal observations to public health pioneers (02:18)

Heather Simonsen: Let’s start first with what sparked your interest in public health, specifically cancer. Rachel, let’s start with you.

Rachel Ceballos: Well, I actually started as a bench scientist and was studying stress effects on biology and noticed that there wasn't a lot of representation from black and brown individuals in that research. Having grown up in a neighborhood that was primarily Latino, I saw a lot of inequities around me and wondered how that would be studied without someone kind of taking the initiative. And how do we bring that representation into the research? So, it was part of my postdoc where I met an individual who was a leader in community based participatory research, Betty Thompson. And I got to study under her for several years, and learned about public health and how we can bring together sciences that study the biological to the community in the context of public health.

Heather Simonsen: Well, we're so lucky to have you here. And I think it's so cool how you took that passion and turned it into such an incredible career where you can make such a difference. So, Garrett, you grew up in southeast Idaho. How did your upbringing influence your career now?

Garrett Harding: Yeah, it's a great question. I grew up in a city called Pocatello, Idaho, which is in southeast Idaho. And I come from a long family lineage, I would say, of people that live and work around that area, whether in agriculture or in other small businesses. Growing up, we always looked to Utah and Salt Lake City as kind of the metropolitan area where you would go for school shopping, you would go for weekend getaways. So, to think about from a healthcare access perspective, growing up, there wasn't a lot of specialty care. Or if there was specialty care related to oncology or cancer, it wasn't necessarily what you would find in Salt Lake City. 

So, when I was in in high school, and then later in college, I had a family member who was actually diagnosed with cancer, and they came to Huntsman Cancer Institute and received treatment. It would have been right after we had opened our cancer specialty hospital. And from even that moment, I think I knew what the mission and the vision of Huntsman Cancer Institute was. Knowing that my family member received amazing care and knowing that there were often a lot of people in our community who were referred to Salt Lake City for that specialty care. So, I think I always had an affinity, knowing the really great work that was happening. Then after college, being able to put a lens of kind of the public health framework on that.

Heather Simonsen: Oh, I love that so much. Thank you for sharing that, Garrett. And Rachel, you grew up in the Bay Area. How did that inform what you do now?

Rachel Ceballos: Well, I grew up in San Francisco. And there was a lot of diversity, and a lot of wonderful neighborhoods that had a lot of different cultures that were working together. There was also a lot of very clear inequities between those communities. I grew up in the Mission District, which is primarily Latino now and was when I grew up, there were a lot of immigrant families. My grandparents, both from Europe and from Mexico, are immigrants. And I think what I noticed once I went to college and saw how other people were living outside of the community, that there was a lot of persistence of inequities that was generational. 

That's one thing that caught my attention, was what was causing those inequities? We were able to talk about it almost in like a humorous way growing up, but once I went to college and learned what the language was about inequities, and systemic racism, and things that limit or that contribute to the persistence was when I really became committed to how do we change this? Because inequities are the unjust right to full health. How do we address that? So, I was lucky enough to have the opportunities to learn how to study how these systems interact from the multi-level perspective, and how are we able to try and intervene?

Heather Simonsen: And when you say unjust, meaning everyone should have access to great and full health care, right? And the reality is, that isn't happening.

Rachel Ceballos: Exactly.

Building bridges in cancer care: the integral role of community engagement (07:21)

Heather Simonsen: Thank you so much for sharing that. And that's where you come in, you're both such incredible people and such an important part of our team at Huntsman Cancer Institute. Let's define community outreach and engagement. What's at the heart of your department, Garrett?

Garrett Harding: Yeah, it's a great question. I think something that both Rachel and I, and all other team members, feel so passionate about is that community really is the core of what we are. Community means many things to different people; I think that's one of the questions that we like to ask ourselves and our teammates. But knowing that we live, and relate, and identify in parts of many communities, right? I myself am part of many different communities. So being able to take that lens and put that over the work that we are doing at Huntsman Cancer Institute. So that we, as an office, can look to our clinical efforts, and our research efforts, and our education efforts, and our screening and prevention efforts and say, how can we really bring the voice of community into that work? And ensure that those communities that are all across the area we serve really are looked at and represented in the work that we do? I think core to that, additionally, is that we cannot do that work without our community partners. They contribute to all of the amazing work that is happening as well. Because it's not just the staff, and the scientists, and the providers, but it's really everybody that is working in unison and a lot of synergistic efforts to be able to make that happen.

Heather Simonsen: Oh, absolutely. Would you add anything to that, Rachel?

Rachel Ceballos: No, I think that was a good description, with the exception of outreach being the educational aspect. I see that as very different than engagement, which is the relationship building and the depth and quality of the relationships. Which is an extremely important feature of our work. So, our work ranges from more superficial, maybe one-time touches at health fairs, where we can provide education and answer some questions. Versus the other side of our work, which is engaging both internally in our own institution, and understanding how all of our systems impact community, and interact with community, and trying to get community voice into those systems, but also partnering with communities, understanding their strengths, and integrating those into the system. Because we at Huntsman cannot change the impact of cancer across the five states on our own. It's something that all of us across the five states who are working in cancer prevention and control need to do together. So those relationships are absolutely critical. And how we interact with communities and are able to develop in depth relationships is key.

Creating safety is a community effort (10:28)

Heather Simonsen: Well, let’s talk a little bit about exactly what you said. How are you fostering these relationships in the community?

Rachel Ceballos: Well, there's a number of different ways. One is we do go to health fairs and a number of events, which are a really important part to start discussions, to hear people's stories, to introduce the idea. I've gone out to a few events here and we bring the idea of radon, which is something that Garrett is leading. And so many people have said that they didn't realize its relationship to lung cancer and how prevalent it is here in Utah and in our Mountain West states. So that's a really important piece. The other part is relationships with each of the state’s cancer coalitions and nonprofit arms within those states that are working in the Mountain West; making sure that we're communicating and supporting one another and trying to implement interventions. And that brings in research. How are we bringing in scientists into the community and the community into our research before the research gets designed? Which is a key part of community based participatory research, making sure that the community is able to ask questions of the scientists before they start their research.

Heather Simonsen: So, when we talk about community partners, who are we talking about? Can you give us some examples?

Garrett Harding: Yes. So, community partners really run the full spectrum of people who are working in the community and living in the community. It could be folks that we engage with, like the State Departments of Health and Human Services that are funded by the U.S. Centers for Disease Control and Prevention (CDC) to be able to enact a lot of these cancer control and cancer screening programs. We know that we also partner with nonprofit organizations that are serving very specific communities. Like the Latino community, or the Native Hawaiian Pacific Islander community or the LGBTQ community. They can be businesses, right? In small communities that are offering support services to their residents. It can also be faith-based organizations where people are coming to receive education. Or any type of other forum to be able to receive information. Aside from that, we also work really closely with state cancer coalitions. State cancer coalitions play a very big role in their state, because they are convening a lot of those same partners in their state to be able to implement a lot of this work, and we've been very involved in that. It's also families, it's also these community champions that we've previously talked about. Anybody who really has, I would say, a passion or feel a responsibility to want to better this cause and help advance what our vision is.

Heather Simonsen: Would you add anything to that, Rachel?

Rachel Ceballos: Just the individual patient advocates. Individuals who have had an experience with a family member often seem to be some of the people who have the most energy and enthusiasm to move a project forward. Supporting them is important, not just emotionally or intellectually, but financially, in some ways. Sometimes hiring them as contractors, because individual patient advocates are extremely passionate and they bring such a unique perspective. Sometimes hiring them as an individual contractor may help you bring a project to fruition that your team may not be able to. So, for example, we have in our disease centers, an individual who has been hired to help with bringing research through the perspective of the patient before it goes in to grant submission. And she has established a wonderful team of people that are able to review that material to make sure that it reflects the needs of the patients. 

So that's an example of how an individual community member is able to make a difference. I think no matter how we engage with the partners that were listed, whether they are at the policy level, or it's the grocery store down the street, if they are a trusted community entity, they are key to our mission to be able to talk about cancer in a safe way. And that's really what we're trying to create, is safe environments to talk about something that's extremely frightening and overwhelming. Trying to get people to get screened is not easy. The rates are quite low in our Mountain West states and a large part of that is because of how frightening it is. But also, there are competing demands and cancer is down the road. So how do we talk about prevention and screening early on? Making it a more comfortable topic and learning about all of the resources in our Mountain West region, and how we're working together, being able to get to that point and have that trust is really going to make a difference in the outcomes that we see.

Harnessing the power of the people (16:20)

Heather Simonsen: Gosh, this is a big mountain you’re climbing. I think a lot of people may not realize all the work behind the scenes that goes into it. And yet, it’s such important, lifesaving work. What are the unique challenges, Garrett, that you face in this work?

Garrett Harding: Yeah, I think you hit it right on the head, Heather. Which is, this some days feels like an insurmountable task that we have all collectively chosen to engage our time and our efforts in. But I think the thing that really brings it down to think about in the daily and the manageable is being able to think about and ask the community what it is that they need. I think so often, as Rachel had just mentioned, there may be examples in the past where researchers say this is what we think that the community needs, or this is what we think we need to invest in for the community, without actually asking them. So, I think it really starts there to be able to say, what is it that you need? Whether it be resources, whether it be additional collaborators for a project, whether it be expertise that we may have at Huntsman Cancer Institute in the clinic, or the research or the training space. Then being able to take that voice and then liaise with the different groups that we have internally and say, how is it that we can help fulfill what it is that the community needs?

Heather Simonsen: Great answer. And, Rachel, can you help us understand what you're doing to address those gaps?

Rachel Ceballos: Well, I think one of the major things that we're working on is addressing the distance as a disparity, and the morality that exists here. Even though we have people who work with us who are from some of those communities, being in the world that we live in, our perspective changes. So keeping in touch with the community, and making sure that those that are living there now, who know what it's like on the day to day and what the barriers are, and what the strengths are, making sure that they are present. Not necessarily through us, we're the conduit. We're kind of able to connect people, but making sure that those voices are present. We just had a community advisory board meeting, which we are refreshing our community advisory board to represent the five states. And a summit of I think 45 individuals from across the five states came to talk to us about what they're doing in their communities, how Huntsman Cancer Institute can support them, listen to what some of our ideas are, and how we can work together and start to have those conversations. So that's one way. Garrett, any other things you can think of?

Garrett Harding: I'll just mention from the Mountain West cancer summit that Rachel just mentioned, I was in awe of all of the amazing ideas that our partners and residents from the Mountain West brought to the summit. Their shared lived experiences, but then also their professional expertise. Because both of those things exist in this reality. And being able to really listen to them and say, okay, this is an opportunity where we can move forward, right? Knowing that there's a collective agreement that that is something that should happen. And it really was heartening, I would say. And really empowering. I left that meeting feeling rejuvenated for the work that we do here. And just very grateful knowing that a lot of the work that is happening is not being led by Huntsman Cancer Institute in this space. And that's great, because we know that they are doing amazing work in their communities. And we are there to either support, step away if they don't need us, or listen to their ideas where maybe we can lead out on projects that they are not able to.

The importance of a message coming from within (20:36)

Heather Simonsen: So really, the work is multifaceted. And Rachel, you've done a lot of work in the Latino community. A very important part of our community, they make up about 20% of the city's population. You started a community champions program, what can you tell us about that?

Rachel Ceballos: So that is a program where we're really hoping to empower community members themselves. To deliver cancer education and be advocates for cancer screening, prevention and control in a way that they think is most appropriate, because we don't know. And they have lots of ideas and lots of influence, especially those who are community leaders in an unofficial capacity. They have a lot of influence. I believe, and others believe, that the community is more likely to listen to someone who is from their community, that they can relate to. There's whether or not people talk about cancer, how they talk about cancer. Hearing that from someone who is similar to you, versus someone who is outside your community, the message is received very differently. So, this program, we’re starting in the Latino community, because that's where my research is. Then plan to expand to other racial ethnic groups, the LGBT community and others, and then rural and frontier areas as well. Who are the people that really do have influence and impact? We would like to offer them training in cancer, one on one general cancer education, patient advocacy, research, if they'd like. And how do we bring them into the process so that they really become the gatekeepers? Eventually, we would like to have our own staff throughout the area we serve. But really, I believe it starts with the community and just talking about cancer and learning how to approach a community and identify those community strengths. And that's not something we can do without those community champions.

Tailoring cancer care by addressing the diverse needs of the Mountain West (22:52)

Heather Simonsen: Right. And you mentioned earlier that we do serve a five-state area, the Intermountain West. And each of those states, they're so different and unique. Garrett, how do you work to address the unique needs of each state?

Garrett Harding: Yeah, it's a big challenge. And I think it really starts with listening, as we've mentioned previously. For many years, we have brought some of these community organizations together to listen and really hear the challenges that are happening. As an example, we've learned that there's a lot of commonalities. We mentioned distance as a disparity, we know lack of access, or lack of specialty care in some of these communities, from an oncology perspective. Or even sometimes hospice care is not offered in some of these cities, right? If someone is kind of end of life with a cancer diagnosis. So, while there are commonalities, we know that there's a lot of differences as well. Knowing that what we may partner with Nevada on to address some of their priorities may not be the same as what we partner on with Idaho and those partners. The same goes for Wyoming, and Montana, and other parts of the state of Utah. So, we've been able to really bring these people together. Which, as they've talked with us, and without us, they identify a lot more of those additional commonalities. But then they're able to tap into each other to also say, what is working in your community that we can implement in our community? Maybe it's based on the framework, or the research that's been done, or the outcomes of that, and then just adapt it so that it really does reach more people. But I think we're learning every single day that we cannot generalize, right?

I think we often think of rural and frontier as huge barrier, but some of the things that we've learned is people love living in those communities, right? They live there for a reason. And so, we don't want to look at them as oh, we're here to help fix what you may see as a challenge, or I should say what we see as a challenge. But how do we tap into the amazing things and the vitality of these wonderful communities, whether they be urban, or rural, or frontier, and really embrace the things that are going to work for them?

Heather Simonsen: That’s such a great approach. Did you have something to add?

Rachel Ceballos: Well, I was thinking along those lines, Garrett, that really talking about the asset base versus deficit base is a conversation that we're having in equity overall, in equity research. We see Huntsman Cancer Institute as a convener, to bring together people who are doing similar work across those states to support one another. And that's really one of the things that we can do to help organize that others may not be able to do across those states, and puts us in a really unique position that we take very seriously. Our role as a convener and bringing people together. Helping people to understand each other's language on how they speak about cancer, how they speak about even prevention. What does that mean? And have these conversations where we can figure out for a specific community, what does that look like? What does that mean? And not start from scratch every time, which some of the communities have been doing. But to take resources from across the states and bring them together and be able to make them appropriate for their own communities.

It all comes down to trust (26:43)

Heather Simonsen: It's like adapting what you've learned and what you know. Thank you for that great comment. And part of this work, you've established a community advisory board, right? Can you tell us about that, Garrett, and how it works?

Garrett Harding: Yes. So, the community advisory board is comprised of community representatives, and leaders, and patient advocates, and survivors, and residents of the five-state Mountain West area we serve. The goal of the board is to really provide a hub where we can not only listen to these leaders and these board members, but where we can also bring forth initiatives to them and get their input and their feedback. And be able to bring research opportunities and research projects, and really get the voice of the community to say, that's not going to work in our community, or that language needs some tweaking to be able to be fully embraced in our community. So, we're really proud of our board that we have. We just had a meeting a week ago, where we were able to get their input on all things related to community, and even the establishment of the board, to see how they want to engage with us. We've had really great sponsorship from our executive leaders at Huntsman Cancer Institute. Knowing that what we learn can ultimately be brought back to our team, and multiple other teams at Huntsman Cancer Institute, to really help guide the strategic efforts.

Heather Simonsen: Well, and really what you're talking about is building trust. I mean, all this work that you're talking about, is that at the heart of what you do?

Rachel Ceballos: Absolutely. Yes.

Heather Simonsen: Can you tell when you're succeeding? I mean, I guess I'm curious, how do you know when you're succeeding?

Rachel Ceballos: That’s a question.

Heather Simonen: Yeah, it’s hard, right?

Rachel Ceballos: So, we actually are going to be sending out a survey where we can measure trust, and perceived control, and influence of the community partners. Hopefully, you know, I'm sure it's good as of now, because they continue to come back to the meetings. But hopefully, we'll be able to measure depth and quality. Meaning that the types of engagement changing are increasing over time. It's really about them coming back, meaning the community representatives coming back to us and asking questions and continuing to work with us, that's part of how we can tell. A big part of that rests on us being able to follow through on what we say we're able to do, checking in with them and really being that reliable resource for them. So, a big part of the kind of engagement that we do is trying to make sure that we understand our capacity and are clear about what the limits of that capacity are, so that we aren't making promises that we can't follow up on.

Heather Simonsen: Right. I mean, when you think about any great and healthy relationship in your life, you know, like your best friend that you're going to go to when you have a problem, right? That's what you're doing really. Being honest, and clear, and relatable, and asking those important questions of these community members. I love that so, so much.

Using transparency and follow through to promote community success (30:24)

Heather Simonsen: I know there's so much work that goes into building these partnerships and making them successful, either in Utah and surrounding states. What does each partner really need to contribute? What does Huntsman Cancer Institute need to contribute? And what does the community partner need to contribute to make it successful?

Garrett Harding: Yeah, I think that's an interesting and very important question. I think from Huntsman Cancer Institute, it's very important that, as Rachel mentioned, that we follow through. One of the things that we have always said is we will listen to all of your ideas, right? We want all of those ideas, and all of your brainstorming, and all of your voices represented. We know that we're not going to be able to do everything. But we want to be able to be there to listen, and then determine, how can we align some of the efforts that we have? Our resources, our strategy. And being transparent, I think, with the community. To say, hey, we're not going to be able to tackle that right now, but we've heard you, and maybe we will prioritize this for the time being. But knowing that they have been heard and knowing that there is also a direct line to be able to say to leadership, this is what the community wants, this is what the community is saying. Then how can our team, which is what we are tasked with, ensure that that voice is then represented in all of the different mission areas of Huntsman Cancer Institute? And maybe I'll let Rachel answer the second part, which is the community piece of that.

Heather Simonsen: So, your community partners, how do they make this relationship successful? What do they give?

Rachel Ceballos: I almost don't know where to start with that, because I feel like they give quite a bit. The commitment that these community partners have to each of their communities is really impressive. They will go above and beyond for their community. They have set up infrastructure, or are supporting one another and building infrastructure, to bring cancer care to the community to the best of their ability. They're working on policy level initiatives. They're working with individual patients and have a real sense of what the day-to-day barriers and facilitators are for a cancer patient in their area. They have a very deep understanding of the psychosocial aspects of the cancer experience, and how that can impact an individual, and a family, and are looking for resources to support them. They're working with social workers and constantly trying to build relationships to find financial support. And just keeping the lights on sometimes when someone has cancer is a critical piece. That if they can take that away, that is such a relief for the cancer patient who can then focus on themselves. So, the number of things that they're doing is really immense. And all of those things are part of what we do as well, but extending that to the person's home so they can stay close to home. I've had people ask, you know, does Huntsman want to take our patients? And that's not what it's about. I've talked to our leadership, and they are behind that idea that it's about bringing cancer care closer to their home where their social support networks are, so they don't have to travel this far. Especially in winter months, trying to come over the mountains to get to Huntsman. They want to serve their community in every aspect of cancer care, and may not have the resources at this point, but hopefully we can work with them to find grants and other ways of funding and helping support their networks. As well as, how do we connect with our affiliate sites, and build up our affiliate sites, in a way that can better support that community members?

Heather Simonsen: I have such a respect for what you're saying. Because, really, they wear so many hats. When you mentioned it's because they may not have the larger staff like metropolitan areas, like we do, they're really having to be flexible and do so many things. Like you mentioned, keeping the lights on for a cancer patient. My gosh, that's just very deeply touching. Thank you for mentioning that.

Obtaining a [future without cancer] through equal access and a willingness to improve (35:19)

Heather Simonsen: I'd like to ask you both a question we ask all our guests. And that is, what does it mean to you to [make good on the quest to end cancer]? Garrett, let's start with you.

Garrett Harding: I think for me, it really boils down to how can we ensure that there is access? Access to preventative care, access to screening, access to survivorship, to treatment. And access to all of those additional supportive services as well, like education...I think all of those things should be in place, and need to be in place. Because I think it's an ambitious vision that we have at Huntsman Cancer Institute. But knowing that we have so many evidence-based tools that are not necessarily being utilized, right? We have screening modalities that are available to screen and detect cancer early. We know that there's preventative behaviors that can prevent more, if we adhere to those, more than 50% of all cancers. And so...it's ensuring that everyone has that equal access. Both to the services and the education, and, ultimately, to the resources.

Heather Simonsen: Thank you. Rachel, how about for you?

Rachel Ceballos: It means equal access, as Garrett had mentioned, but I think everyone having equal care and equal outcomes. I know that's a difficult thing for a lot of reasons. No cancer is the same, but not having barriers like geography, or what socio-cultural population you're from impacting that cancer. Sometimes those things happen unconsciously. How do we look at ourselves and continue to evaluate how our communities that we're serving are being impacted? And what can we do to improve? It doesn't mean that we're perfect or find a way for it to be perfect every time, but it means that we're willing to take a look at it. And do our best to try and rectify any inequities that we see in those communities that we serve.

Heather Simonsen: Thank you both so much for being here today. I feel like we've just received such a wealth of knowledge and I’m just so grateful for the amazing work that you're doing in the community. So, thanks for being here.

Rachel Ceballos: Thank you.

Garrett Harding: Thank you, Heather. This has been wonderful.

Thank you (38:19)

Heather Simonsen: Thank you so much to Rachel Ceballos and Garrett Harding for joining us today. We're so grateful they could tell us about how Huntsman Cancer Institute is working with and listening to communities across the Mountain West. To our dedicated listeners, we are thankful for your support. For additional resources, be sure to check out our show notes. And if you want to stay connected with us and be the first to know about upcoming episodes, subscribe on your favorite podcast platform. Please log on to Apple podcasts and leave us a five-star review. This helps other people like you find this podcast. If you have questions, comments, suggestions for future episodes, or a personal story you'd like to share, please visit our website huntsmancancer.org. I'm your host, Heather Simonson. A special thanks to the Huntsman Cancer Institute Communications and Public Affairs team. And to the Pod Mill, for their help with this episode.

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