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
Dr. Erin Bailey │ Bridging Gaps in Cancer Prevention
Discover the inspiring journey of Dr. Erin Bailey, whose personal experiences and family history with breast cancer have fueled her relentless advocacy and transformative work in community health education. Hear her recount the pivotal moments that led her from volunteer advocacy with the Witness Project of Madison to her influential role as the Associate Director for Community Engaged Research at the University of Wisconsin-Madison's CRISP program. Dr. Bailey’s narrative is a testament to the power of personal passion in reducing cancer disparities, especially among Black women.
Dive into the innovative tactics Dr. Bailey and her team have developed to make cancer education accessible and relatable for all communities. From the creation of culturally relevant curricula for rural and African-American populations to the essential role of health literacy, Dr. Bailey shares valuable insights on adapting medical information to be actionable and understandable. Learn about the collaborative efforts in Adams County and the importance of visual representation in health materials, ensuring that every community can benefit from early prevention strategies and informed cancer screening practices.
Lastly, we tackle the broader implications of community engagement in cancer prevention, discussing the historical mistrust in the medical system among Black communities and the vital role of allyship in fostering health equity. Dr. Bailey emphasizes the importance of fair compensation for community members’ contributions and the need for more community-based researchers. Through stories of resilience and hope, this episode underscores the necessity of building supportive pathways for students from disenfranchised backgrounds, empowering the next generation of advocates and change-makers. Join us for an episode filled with heartfelt stories, practical advice, and a call to action for positive change in the face of adversity.
Today we are joined by Dr Erin Bailey. Morning Morning, good morning, welcome, welcome, welcome. I'm so glad to get a chance to speak with you, so please tell the people who you are.
Speaker 2:Yeah, so Josh has known me for a while. We'll go with that to start, but my current title I am the Associate Director for Community Engaged Research in the College of Letters and Science here at the University of Wisconsin-Madison in a really cool program called CRISP, which is the Collective for Research, impact and Social Partnership. These titles get long.
Speaker 2:You get upstairs and the titles get long. So I'm a recent doctoral graduate from the School of Human Ecology, also here at UW-Madison, did all three of my degrees here in something called civil society and community research, which is essentially training us to be social scientists around community engaged and community based and participatory action research. I have over 20 years of experience doing outreach, education and interventions on the cancer spectrum and started my foundational work as just an advocate around breast cancer very early on in my twenties. And then you know Joshua cause. We worked together CHDI at the Carbon Cancer Center where I formerly led the African-American outreach program for them, and then have been hanging around and moving and shaking.
Speaker 1:So talk about your family history of cancer and how it led you to become a cancer awareness advocate.
Speaker 2:Yeah, so we're jumping right in. This is kind of like your origin story, right? So my husband's really into comics. We talk about our origin story and what that is. So we'll try to make this as short but reasonable as possible.
Speaker 2:So I'm actually from Madison, Wisconsin, born and raised here. I grew up in one of the most poor but also most diverse neighborhoods here. I am biracial, my mom was white and my dad was Black, and I say was because both my parents are deceased In 2003, early, my mom was diagnosed with stage three metastatic breast cancer, which essentially changed the trajectory of not only our family's history but each one of us individually and how we approach life and what we did. For me, it was pretty dramatic. As the oldest of my mother's kids, I felt the need to just have information. I'm a nerd at heart. I seek information where I can find it. It helps me balance out the emotions that I'm having, but also figuring out what I need to do to be an advocate for the people around me.
Speaker 2:So, based on that, I happened to have like divine providence with a program called the Witness Project of Madison, which was then run by Dr Myra Michelle DeVos, who was one of my mentors and it was an educational program for Black women around breast and cervical cancer.
Speaker 2:And I went to a Saturday brunch and it changed me and she was looking for volunteers to do this really cool Hatter's Tea where we taught African-American women about breast and cervical cancer wearing our hats which has historical precedent, excuse me, based on our church history and then started volunteering with that and then subsequently ended up taking over the program when Dr DeBose got her PhD and moved to Texas and it changed me.
Speaker 2:I started doing education, training folks, learning how to do interventions, how to do evaluation, and then learning about the huge disparities that there were between Black and white women generally. Right, so for a very long time, Black women were less likely to be diagnosed than their white counterparts and white women, but they were more likely to die of the disease. Some of that stuff has changed over the last 20 years Diagnosis is almost on par, but we still have a little bit more women who are Black dying from this disease, so we're trying to figure out what that is. So that's been my last 20 years on the spectrum, but it grew from just breast and cervical cancer to CHDI in 2012 when I came on board and started my community work there.
Speaker 1:Yes, that part is very interesting as well. Can you talk about the influences that led you to transition from that space as a volunteer into working for CHDI?
Speaker 2:Yeah, absolutely so. Again this volunteer space with the Witness Project of Madison, which I still do. I still teach about breast and cervical cancer. That hasn't changed. It's something that's just ingrained in me because of family experience. So in late 2011, I was utilizing my first degree, a bachelor's of science and family development and child studies, to be a nanny, in addition to two other jobs and working, just like I don't know if I'm going to grad school, but let's figure it out. I happened to get a message from the people I was nannying for, like you should apply for this program at the school. I think you'd be a good fit for it because I was doing the witness project stuff. But then I also happened to get an email in.
Speaker 2:November. That said, late at night, 11, 1115 at night. Erin, where's your resume? It's from Dr DeVos. Where's your resume? Send it over. Gail needs it.
Speaker 2:And the Gail I'm referring to is Gail Johnson, who's the director of the Wisconsin Well Woman Program. She has been since its inception, a breast and cervical cancer detection program that's for the entire state of Wisconsin and all 72 counties. They're in regions now where women who are uninsured or underinsured can get breast cancer screening for free or reduced costs through their program. It's a wonderful program. If you need it, please call, go to the website Wisconsin Well Women Program. It's on the DHS website.
Speaker 2:And Gail had some money because it's a CDC-funded program and they were looking to expand colorectal cancer screening for Black folks here in the state. She wanted to start at the NCI designated cancer center, which is the Carbone Cancer Center, the only NCI currently the only NCI designated cancer center in the state. And she knew me. She knew me for my witness project work because she had been a longtime advocate and fan of the witness project and also funder, and she saw a light in me, that I got excited about the work, that it meant a lot to me and she wanted me Send me your resume. Okay, here's a position description. Okay, apply for this job, I will.
Speaker 2:And got an invite for an interview with this room full of three people that I showed up to in a room that I'd had an interview in before.
Speaker 2:That I didn't get a job for, which was interesting, but I showed up and I vibed out with the two co-directors at the time and the other person who they were staff, and so I joined CHDI in the beginning of 2012 as this outreach coordinator for African-American Cancer Outreach Project, which we named it's a really long title because, again, long titles, why not and really started around thinking about colorectal cancer.
Speaker 2:But the first thing we needed to do was pull data right and figure out what cancer looked like here in Dane County, what it looked like in the state, and really kind of looked at disparities in a different lens than maybe even American Cancer Society had looked at, because they do like these big state reports. So, really looking down deep into the data about how we're going to use the data to make a difference here in Dane County, and that's how it all started. It was able to utilize social capital, which I think is another conversation for, like training and getting people into jobs and how do we change health disparities? On the face of it is social capital plays a big role.
Speaker 1:I think, in how we get more people who look like us right into the health field. Please give a nod to a couple of those people that were in the room, because I want to make sure that we give them their due respect.
Speaker 2:Yeah, so she probably mad at me because I've used her whole legal name, but Dr Myra Michelle DeVos. We're going to just like hands down. She gave me space and opportunity to develop as a young person and a thoughtful thinker and then as a scientist she helped edit down my dissertation, which was great, and she showed up when it was time to defend and that's the type of relationships that we look for, right.
Speaker 2:And Michelle was a parish nurse here in Dane County Not that church is here but then her partner in work, carla Gaines, who I think everybody knows if they were listening to this podcast, who was one of my long-term mentors and gave me a really amazing internship at Quartz when I was an undergrad so I could look at what Medicaid looked like on the back end through Badger Care and how we approach clientele and patients who need a little bit extra help. And then we think about my whole CHDI team who helped, joshua included, who was there for a bit with us, or I was there for a bit with us, or I was there for a bit with you, I should say, since you're still there, and those two women really kind of put it out there. And I want to also give a shout out to Dr Deacon Gloria Ladson-Billings, who was a breast cancer survivor twice over and really showed me what it meant to be an advocate that moved to move community into the work and raise funds for breast cancer awareness.
Speaker 1:You have a really unique journey and I want you to talk about the name of the podcast, Cancer Clear and Simple, and how it comes from education curriculum that was developed in CHDI. Can you share about why it was created and your contributions to the information?
Speaker 2:Yeah, absolutely so.
Speaker 2:When I started in 2012, there was another young person, rebecca Linskins, who had been hired to work on rural health disparities and rural cancer disparities, which is a very large population here in Wisconsin Rurality far outweighs our urban areas in terms of how many counties have rural areas and what that looks like and she had been hired to figure out what was going on.
Speaker 2:So part of her assessment was going out into communities, talking one-on-one, talking to groups, figuring out what they needed, right. So we're not talking about data just yet. Right, we know there's disparities in rural. She's just getting to know people and that's a big part and parcel of community engaged research and community engagement period, right, thinking about outreach and what that looks like. And so I came in and she had already partnered with folks in Adams County to start developing a cancer education curriculum that they could teach in person, like at their aging and disability resource centers or at libraries or at other kind of areas where people gather, maybe like churches or schools, in these larger rural I mean these larger rural counties, right, where you kind of have to come into almost a cityscape, where there's kind of designated physical places where you would come in.
Speaker 2:And I was reading through it and I was like this is great and Becca had a background in health literacy so it made it awesome and she was working with community to edit it down and make it reasonable, right and usable for community members to actually have access to.
Speaker 2:And that curriculum was based on a curriculum out of Alaska with Alaska Natives that Melanie Cueva did, who we know from our previous work with Spirit of Eagles and some other things that Becca and I had been involved with. But this curriculum was amazing but it was long. I think it was like nine or 12 modules and so we were looking to maybe slim it down but also put on all the information. So Becca was really working with these rural communities in Adams and specifically Adams County so they got it down to three modules and then we kind of negotiated like what's going to go in it. So they launched the first rural one and I was part of the rural stuff. But I was like this is so awesome. You did such a great job and we know across the disparities landscape that some things are similar across communities. So we quickly started to think about adapting it for the African-American community and what we would need to adapt for that.
Speaker 2:One of the major things was the pictures and the drawings were of all white people right, and those were easy to find like free images you can find everywhere of people who are white, sure, free images of black people, of, like what skin cancer looks on black people, right? So we've got some great tiktokers doing lots of great work and, you know, equaling out what visuals look like for how doctors learn and nurses learn. So, thinking about how we depicted that, so we made sure that all of the materials that we had were reflective of Black people and had a community advisory board who came and reviewed the entire document with us and we're like no change this, do this. And so I sat at a table with my aunties and, like my community uncles, and they told me what was what, and so we adapted it based on that feedback and then him approve the final copy, which we then launched here in Dane County.
Speaker 1:Something that jumped out at me was the health literacy components. Can you just talk a little bit more about that concept and why it's so essential to doing good work in communities?
Speaker 2:Yeah, so I haven't looked it up, just honestly, like in three or four years, deep in the dissertation desert, right, but if I remember correctly, most Americans read right at about an eighth grade level. I don't know if that's changed, maybe 20 or 30 decades. Specifically, we know that communities who are disadvantaged tend to have less education overall and less access to regular exposure to things like prescription meds or doctors who speak a certain language and by certain language I mean high level language, right, rather than user friendly. You and me were hanging out having a chat, right? Yes, so Becca had done her master's degree around health literacy. So what does that mean to be able to read a prescription? What does it mean to be able to read doctor's orders? Or like, go into your MyChart, right, your electronic health record? I've got it. I have new abonics on Friday We'll work on it.
Speaker 2:So thinking about what that looks like and how we communicate effectively about what somebody needs to learn. So, in health literacy, if I had a one pager and I was going to teach about breast cancer, I can't use words that oncologists would use. I can't use all the words that surgeons would use. I do need to use those words. I'm not saying that I don't, but I do need to have very simple and usable explanations that someone at an eighth grade reading level can understand and intake, right, and then be able to utilize for their existing lives, right?
Speaker 2:So health literacy our ability to put it into a format that everyone can use and that's super, duper important when we talk about health information. It's also why, when we think about messaging and the messenger, it matters, right. So who's saying it, how they're saying it or who's writing it and how they're writing it, as well as who's represented in the depictions that we see, right, whether it's in a flat format like a handout or something that we're hearing. Right? So I have my high professional voice on right now and I'm not going to code switch. Well, we could, right, I think both you and I can do that, yeah, but knowing that I can walk in a space and have seen people kind of be like what just happened, right, when we flip the switch on, when we come into the spaces, that matters. And also thinking just about, like videos, who's depicted and what does that look like. So health literacy is more than just the information that we're giving. It's also the messenger and how we're deploying it. I love it.
Speaker 1:How do you approach cancer screening as someone that knows a bit about their family cancer history?
Speaker 2:So yeah, I know a lot about my family history now, probably more than I ever wanted to know, but it was also very useful in thinking about how I taught about cancer prevention Now that I'm 43, I have had breast cancer screening since I was in my mid twenties because my mom was diagnosed so early and there's some guidelines based on family history for that. I've been having cervical cancer screening since I was a teenager, because you should be having cervical cancer screening starting in your teenage years. I think like new guidelines might say 21, but if you're sexually active, that might change right. So these are the things. Right, we're talking about teenagers getting screened for cancer. This should be pinging off some light bulbs for some folks. So also thinking about, I started having some stomach issues in my late 30s and was struggling and my doctor was like, based on your history, we're just gonna go ahead and get you a colonoscopy.
Speaker 2:So now, at the lovely age of 43, I've already had two colonoscopies because they found something on the first one and my guidelines changed for my screening stuff. So instead of every 10 years from colonoscopy starting at age 50, or they've moved that right down to 45 in the last two years. So now that we're at 45, what does that look like? I should have a one and done at 45 and I shouldn't have to have another one until I'm 55, based on guidance. But because I'm Black, because I have a cancer history, we're going to start a little bit earlier, especially because I'm having trouble with my stomach. So I've had two colonoscopies. The second one was clean, so I don't have to have one again for about eight years now, which is great, I will say. Getting a colonoscopy take really good naps. So don't be afraid of the prep, just follow directions. But that experience made it easier for me to say honestly here's how I'm experiencing it and I understand that people experiencing it differently Right, and we hear feedback all the time, particularly from women, about breast and cervical screening.
Speaker 2:Talk about invasive and hurtful for some people because they experience pain in a different way or they may be shy or there's some things about just having that I don't really have to think, think about. But those personal experience really guided me and how I teach and how I think about how we teach me and how I teach and how I think about how we teach. We can't, from a messaging standpoint public health, cancer centers, doctors, nurses we have to continue to say, or like education advocates, we have a message that has to get out Cancer screening is important, right, we talk about cancer screening for colorectal, for breast and cervical, for skin cancer cancer, for prostate cancer, for lung cancer. Now, right, so, thinking about those major things that we can actually screen for, and there's some new screening stuff coming down the pipeline, right, so, figuring this out, because it is important to get screened right, to get screened in a timely and effective manner, right? So I want to say timely, and I'm going to say it again, timely. Right, we should be on time with our screenings. And if you've been alive, kind of the same four decades that I've been alive, screening has changed a lot. Guidelines about breast and cervical cancer were changing every three years for about a 15-year period. That's not to say you can't trust the system. It's to say that the science and the knowledge and the education that was happening was changing what we knew about breast and cervical cancer, so they were changing the guidelines based on what they knew.
Speaker 2:I listened to your previous podcast when you talked to George and we talked about head and neck cancer. Right, there was a rise in head and neck cancer and we're like why are we seeing a rise in head and neck cancer? Well, because of HPV. Well, what is HPV? Right, it's a sexually transmitted, you know, disease. Okay, so what does this have to do with us? Well, it's important because now they have a vaccine for HPV, which isn't necessarily a screening, but it's one of the tools that we use to prevent cancer. So we know if we can get our children prior to sexual contact right and they're early, right Between nine and 12, they're getting these shots. Their body has a better job, a better defense, yes, defense against fighting off the disease should they have it incurred later.
Speaker 2:And everybody's like oh what? But? But I'm not promiscuous, I'm not this Yo, essentially everybody gets HPV, but your body may or may not be able to get rid of the virus the same way that somebody else is. So it's important. It's just like catching a cold. That's how common I think, like HPV is just germ passing at this point. That's just my personal belief. That's no medicated. I'm saying that there's no like direct information behind that. I'm just saying that from personal, like understanding and from what people share with me.
Speaker 2:But there was a rise right in head and neck cancers. But even at the Carbone Cancer Center, they started doing head and neck screening for free, right, like free head and neck screening, where you could come in. Do they still do that? I don't know if they still do that. So you could come in and see the team, right, and they would come and, like examine your neck and your throat and do all the things. It's because early detection increases the likelihood that you'll be able to live and survive the disease. So we want to make sure that we're getting early detection done, which means early screening and timely screening. So if you're 44, you should be scheduling your colonoscopy out now. Get the referral now, like it's going to ping in your medical system anyways. Tell your doctor you want it because there's a waiting list, right, everybody's doing it.
Speaker 2:Thinking about breast and cervical cancer and what that means for you and understanding your family history could change when you start. So I'm 43 and I've been getting my mammogram since I was 26. And I'm also seen in the high risk clinic at the Carbone Cancer Center, at the breast center, and so I have an MRI every year. I have a mammogram every year and I have two clinical breast exams. And that's because my mom was diagnosed at 42, right, 42, 43 is when she found out she had cancer and she died before she got to 50.
Speaker 2:So this is important information to have and understand, right Like in the overall placement of things 43, 44,. You know, I'm kind of old right now 43, 44. So I'm right in the age group, which is a little weird, but it's more important to make sure that I'm going in and getting my screening. So, yeah, important Understand your family history. If you don't have access to family history for some reason, have really good, engaged conversations with your doctor and or their support staff, like their nurse, or if you're like seeing somewhere, like at access, that they have support staff there to talk to you about screening.
Speaker 1:Within everything that you just explained, that has a lot to do with this next question. You may have covered some of the information already but, I, don't mind you being repetitive. What do you feel are some differences in how common cancers that we've talked about a little bit are viewed in? Underserved population versus majority white communities?
Speaker 2:So I think there is no way. And are you talking about from a community perspective or from a, like, an institution perspective, a community?
Speaker 1:perspective, because you've been in these spaces a lot over the years.
Speaker 2:Thinking about the community perspective and the Witness Project is a great example, right? So the Witness Project started in Arkansas. Started with Black women in churches and the university there with a research center. It with Black women in churches and the university there with the research center. And I remember watching videos that the Witness Project had put together and like listening to the questions that they were getting from people in their their sessions where the the Witness role models and the lay health advisors were teaching right and being like are they really asking that question? And then getting into the OWN sessions here and starting to hear, and then getting into the own sessions here and starting to hear the historical trauma that had been passed through.
Speaker 2:Communities narrative and rural families right, and communities is this very strong thing? Right, because there's value in how we transform and transfer our knowledge from generation to generation, as well as our own experiences and how they shape us and overall disenfranchised and historically disadvantaged community is have been treated unwell within this larger medical system, and it is a huge medical system. There's lots of moving parts in there, but our interface with the systems has not been one of good history. And based on that and based on the fact that we as a country don't do a really good job about explaining science. People have a mistrust right of what goes on. So we have historical precedent which can't be denied. There's tons, tons and tons of books. There's programs. We have our own medical history program here on this campus, like you can go read the word is travesties that we've done to people who look like us and disadvantaged communities throughout history, and to take full knowledge of that and to understand how that operates when people are making decisions about their own healthcare is vitally important.
Speaker 2:So I think our overall history and understanding of what cancer is and how it's one detected and screened for, treated right, because a lot of what we see around cancer is the treatment process and chemo. Chemo is not fun. I haven't been through chemo but I am very up close and personal watching my mom sit in a chair and get her chemo and then going home and being with her over a long weekend from, you know, thursday to Sunday, and watching the effects of that kind of having to see her rebound and then start all over again. Chemo ravages the body it's supposed to. There's no way to attack, you know, the bad cells and the healthy cells. Sometimes everything's got to go and science around that is even changing, right?
Speaker 2:Yes, when we think about immunotherapy and some of the other things that are coming down the pipeline, what our visuals and our narrative stories and how they start to snowball into this larger thing that we carry deep within us, right Becomes this verbal passage of how we pass information along to the next generation. So we have to be mindful of how we interact with that. But, yeah, I think there's a couple of things, right, so historical distrust and mistrust of the medical system, but then there's also this narrative portion of our own stories and how we carry those from generation to generation. So, yes, I have a narrative and it's one where my mom died, right, like I have another aunt who is living with metastatic cancer and had another aunt who had a scare with like some stuff with ovaries and things like I get it Right. But that doesn't stop me from making sure that the portions of my story that are important, which is the early screening, like I've been screened a lot here's what you should be doing.
Speaker 1:Yes.
Speaker 2:While it's important to talk about the history and the trajectory and how my mom's diagnosis literally changed the trajectory of my life, it is important to talk about the important things with my siblings, with my family, with a larger community, about here's what we can do to start to change it, and then also thinking about prevention, right, besides screening, what are the prevention behaviors things that we need to be doing on a personal level or as a community level, right? So eating well, making sure we're getting our vegetables.
Speaker 2:I've been enjoying kale salad all summer Kale and apple salad has me in a choke hold I don't know what it is, but that's what I'm eating all summer.
Speaker 2:It's delicious, but I'm like throwing kale in my lentils the other night, right? So eating better, making sure we're getting out and doing our walks, drinking our water, trying not to smoke, not drinking alcohol. Like these tend to happen, like in more disadvantaged communities, because they don't have access to the same type of things we have, right, and we know that there's an issue with water all over the United States. We know there's an issue with having access to good quality foods regularly, right? So we want to be really mindful of how, not only we're telling the stories of what's happened to us, but how we're changing the narrative back to, like, living a better and well life.
Speaker 1:I'm gonna have to re-listen to this episode again because I'm learning a lot, and here we are, so where should more attention and energy be directed when it comes to cancer screening for underserved populations?
Speaker 2:So I think we have to. So, yeah, I'm a trained, community engaged researcher right now, community-based participatory researcher All the different names you could call it right, I think we have to realize that medicine can't move forward I'm saying medicine broadly because it's a huge system Medicine broadly can't move forward without the community having a voice in what's going on. Yes, science is science, but we need more people to actually participate in the science gathering right of this information. So historically disadvantaged populations have historically not been included in things like clinical trials and there's a huge push, and has been for about a decade, to get more people who look like us into these clinical trials. What we found is Black, brown and rural folks will participate. You have to offer it and what we're finding is that they're not getting offered at the same rate as their white counterparts. So that's some medical training, right, that's some system training and we have a lot of different people doing a lot of amazing work here and in Milwaukee and in the state and around the country to change that, but we have to change the medical system. Communities should and around the country to change that. But we have to change the medical system. Community should be involved in all decisions. If you had somebody deciding upfront what your intervention in the office is gonna look like, right, maybe you would get more people involved, right, and I know people are gonna be like there's no black people in Wisconsin, right, but this problem isn't just Wisconsin. Even in huge centers where we have meccas of Black folks, they're still disproportionately less recruited than their white counterparts. And that tells you about the system, not necessarily the population. So we have to think very broadly about what this means in terms of clinical trials, how we recruit for screening One of my favorite things from a counterpart here in the city they put up one of the mothers from my church on a billboard.
Speaker 2:This is the very first story I told at the cancer center to the marketing team. They put a mother up from the church on a billboard on Park Street, which is one of the thoroughfares here around cardiac prevention and cardiac health right, because she had had a heart attack and a zipper procedure, right? Oh, black folks started coming in to talk to their doctor about their heart health because they put up a billboard. Yes, statistically significant difference they put up a billboard. Yo, three blocks from their health center, ding, ding, ding. I mean, is this not the basics, right?
Speaker 1:I want to give you credit as well because, as I've worked with the Cancer Clearance Simple curriculum, you took that same approach to including the pictures of the people right. So you use people that were in the community, from from the community, in these modules in this education curriculum and to the same effect. When I saw it I was really pleased to say I know this person actually went to their wedding and so just to have that effect from what it is that you're saying totally makes sense and it is very real.
Speaker 2:Yeah, we hired a black photographer from here to take pictures of black and brown folks and it made a difference because people saw themselves in the curriculum itself. It makes a big difference. I also want to say shout out to Papa Smurf, who was like our rural daddy, our white indie, you know person from Indiana who, who didn't necessarily 100% always get it, but he was 100% down to support what needed to get done. I'd just like to say thanks to Rick Strickland while we're on here, because he really made sure that when I said this was needed he was like cool, tell me how much it's going to cost.
Speaker 2:Allyship around health equity work inside of institutions is vitally important to move the needle internally. So if y'all want to show up in spaces and you're white and you're listening to this and you want to show up for the people that you work with and the communities that you serve, please show up in the power structure and demand that we pay people one for their time and pay people for their expertise. But third, like, make sure that you're paying for the things internally that need to get done All 100 percent facts.
Speaker 1:So this question is for the communities, and I want that to be the focus. So what are some developing areas for institutions that communities should be aware of when it comes to engagement and research?
Speaker 2:Yeah. So money makes things happen. So, from a national perspective, national funding models are starting to include community engagement left and right. There's not enough community-based researchers, there's not enough community-engaged researchers. And some people might argue and I'm going to say this, I'm going to qualify this there are not enough excellent and really really, really, really good community-based researchers. There are some people doing community engagement, but they're still engaging in traditional paradigm where they still are kind of doing helicopter research or damaging community relationships while they're doing it. If you're listening, please stop. You can go back to the traditional research paradigm.
Speaker 2:So communities need to be aware that people are going to start reaching out and they want to utilize you for your time, efforts and energy. Make them pay you. You want to participate, you want me to participate in research. What you paying? These should be the questions. Ok, who is it going to impact? Ok, how will I find out when your study is done and what does that mean? Is somebody going to explain it to me? Why should I do this study now and be prepared to talk about why it's important that you should be participating in research? One and letting the community know right, but also being prepared as a community?
Speaker 2:There's opportunities I think in the pipeline that we're working on here in LNS and working on as a campus to make sure that community is prepared to have conversations about research right and health, equity and cancer and these really big topics that they talk about, that we talk about stuff regularly outside of the institution of this medical place, right, community has wisdom and knowledge that we need to be holding on to. So there's ways we can get ready to participate in research. There's from just being a simple participant to actually partnering for a whole research project, from the beginning to the end, to dissemination and funding and all that and what it means and the protocols we have, but also just being prepared to stand up and voice things when they're not done in a way that's meaningful or valuable to you and your family. So those are some community ways I think that we can be prepared From there what are your thoughts about where community engaged research is going in the future?
Speaker 2:Yeah, I'm a glass half full today. Some people might call me like a pessimist. Sometimes I tend to say a realist, because I live this dichotomous life in very different ways, from being black and white to being poor as a child and not anymore to having kind of this wild education. And it's insane. Who has three degrees? Shout out to all you degree holders, right.
Speaker 2:Keep your head up Keep your head up, the semester just started Is that we need to be prepared to create training pathways right for students. There are middle and high schoolers right now watching things happen in their schools that should not be happening at all, right. Educators are burnt out, parents are burnt out, parents are burnt out, but those are the people who are coming behind us to bring up these new wonderful ideas and ways of thinking and how we can change the world, and we need to have pathways for our change makers from all avenues of life. So what does that look like? Coming into a training institution like an, an R1 institution like UW, who's posting stories in the last week about being a number one university in certain rankings, and what does that look like? We have to do a really good job of making sure that we have enough space for students that look like us.
Speaker 2:I came from a historically disenfranchised background. I was poor On the face of it. If you looked at strictly statistics, I wasn't supposed to be here today. We have to change the trajectory, but I got that through social capital and I got that through training pathways that were laid out right. Um, and then thinking about affordability, which uw is doing a really good job thinking about how we make it more affordable for students from disadvantaged backgrounds, and whether or not that be economic or other, and what those training pathways look like overall. So how do we make a training pathway from your first day of undergraduate work? Right, like Beverly Hutcherson doing a great job working with STEM students? Right, bringing them to the campus to do things down in HSLC and walk around the hospital and see stuff. And what does that look like for her to engage with middle and high schoolers who are interested but not really know how to do that? What kind of social capital is she giving them to get where they need to be? Right? Okay, so now they got to college and they're interested in it.
Speaker 2:Now what are the other pathways that we need to be aware of and that they need to? And when you don't have, if you're a first generation college student, you may not even know that there's other ways to be here and you may need more supports. Just because it's a very new and different thing, and I think sometimes we send these 18-year-olds out into the wild. I call outside the wild for anybody that's listening. We send them out into the wild, into this new world, and we're expecting them to do things. But the students that do better tend to have more social support. But if you're the first one out the gate in your family, it's a lot harder. So we have to think about what those supports are.
Speaker 2:And then some people are just done master's degree, phd, medical school Hmm, I don't know what those pathways are, right? So who's there to help mentor you and what are these pathways look like and how are we engaging that? So community based research needs a pathway. Right. We have people that are doing social justice and social equity work as middle schoolers, right. How do we create pathways for them to get to community engaged research across all walks of research, because it can't just be medical. It's got to be social sciences, too, right. It's got to be chemistry, it's got to be education. It's got to be a school of nursing. We got engineering, right, we got. Everybody needs to know what these pathways are.
Speaker 1:So, yeah, I'm digging all of this, this is great and just we're going to wrap up pretty soon here, so what message do you want to leave for our audience and the future guests on the podcast?
Speaker 2:Man. Okay, so it's possible, right? So we know there's possibilities out there. A kid who was in shelter and had a parent who was drug and alcohol addicted and lived in poor, roach infested housing as a kid and had access to some pretty good education in Madison but also was raised in a pretty racist system, who struggled and failed out of UW one good time as an undergraduate it's possible. So I think there's there's reason to have hope in the future of folks who look like us, but that we can be change makers in our own way by just staying the course.
Speaker 2:And I'm not saying it's easy. Anybody who talks to me will be like, oh, this is hard. Here's why it's possible. And not to say that I haven't struggled, because I have immensely, and the loss of my mother just changed everything for me. But it's possible.
Speaker 2:And there's people like me and there's people like Joshua and there's people like Dr Myra Michelle DeBose and there's people like Carla Gaines and Dr Deacon Gloria Ladson Billings, and there's people like Rick Strickland and Amy Williamson and Becca Linskin and Cody Frederick and the whole swath of people. And shout out to Dr Howard Bailey, who is leaving as a director but always referred to me as the other, dr Bailey, which was instrumental. Before I even thought about doing a dissertation, about going on to get my PhD, the director of the Cancer Center said to little old me the other Dr Bailey, shout out to people who see the vision and recognize the people with talent and mindfulness and engagement and joy in the doing. Because even though this work was really really hard, I've had joy, immense joy. Even in all the loss and struggle that I've had, I've had immense joy in doing the work and changing other people's lives.
Speaker 1:That's phenomenal.
Speaker 2:The doors of the church are closed are open. Excuse me, the doors of the church are open. Is this what we're-?
Speaker 1:I really appreciate everything that you've been able to bring here today and share with everybody. I wanna find ways to continue this conversation. I know that we're gonna continue it here on the podcast, but your contribution has been really special and I just wanna say thank you from the bottom of my heart.
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