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In this episode our host, Gelise Thomas, JD, MS, Director of Research Health Equity for the CTSC sits down with the Yvonka Hall, MPA, Executive Director of the Northeast Ohio Black Health Coalition. Yvonka tells us stories about her life, her motivation behind the Northeast Ohio Black Health Coalition, applying lived experience to effective community engagement and impacting health equity, her Long COVID research with Dr. Grace McComsey, work with the CTSC, and more!
Plus, learn more about the CTSC's Community Engaged Research Team.
Links:
- Become a CTSC Member
- Learn more about the Northeast Ohio Black Health Coalition
- Research Health Equity and READI
- Community Engaged Research
“I want to help you just as much as you can help me. And I think that that's part of the most effective community engagement, is that at the end, the community has helped me as much as I have helped them.”
-Yvonka Hall
Transcript
Gelise Thomas: Hello everyone, and welcome to From research to Real Life. I'm Gelise Thomas, Director of Research Health Equity with the Clinical and Translational Science Collaborative of Northern Ohio. I’m incredibly excited to be hosting this episode focused on research health equity with our guest, Yvonka Hall. How are you doing today, Yvonka?
Yvonka Hall: I’m good, how are you?
Gelise: Fantastic. I feel I'm sitting here with a legend. We are at 1464 East 105th Street in Cleveland, Ohio, in a building formerly known as the Medical Associates Building. This building was designed in 1960 by Robert P Madison. The first licensed Black architect in the state of Ohio, and it was for Black doctors who were excluded from practicing at local hospitals. Our gracious host is Third Space Action Lab.
Third Space Action Lab was created to disrupt the vicious cycle of disinvestment and displacement that exploits low income communities of color. They are a grassroots research strategy and design cooperative dedicated to prototyping creative, place based solutions to actualize racial equity. The CTSC hosted its first Minority Health Townhall in 2023, in Third Space’s Reading Room, the only Black owned bookstore in Cleveland, where we've also purchased over 600 books to support our annual Health Equity Challenge Series.
Yvonka is the executive director of the Northeast Ohio Black Health Coalition, the first organization in the state of Ohio dedicated to addressing disparities in the Black community. Yvonka is a member of the CTSC's inaugural Community Advisory Board, Community Engaged Research Network, and READI, Set, BRACE Experience. Yvonka, thank you for being here with us today.
Yvonka: Thank you for having me.
Gelise: So let's get to it. From led to flavored tobacco to the environment. When we think about public health priorities. And someone was leading the charge locally and nationally to eliminate health disparities, you are synonymous with search engine results, which I'm sure you're aware of! A self-proclaimed agitator, can you tell us a bit about who you are and why you do what you do?
Yvonka: So I am Yvonka Hall, the Executive Director of the Northeast Ohio Black Health Coalition, the nationally recognized Northeast Ohio Black Health Coalition. We are the first coalition in the state of Ohio to focus exclusively on African-American disparities. Our work is to create equity by addressing the cumulative impact. So we look at everything around the air, the land and water. So the impact of racial, economic, environmental and social justice inequities. I started doing this work and think, you know, we all find our calling. And this was my calling. So I've been doing this work since I was six years old. and for people who know me, they know my story. But my mom was murdered in front of myself and my younger brothers. And I promised that I would use my life to help change the lives of others. And that has led to the creation of some cutting edge programs, and the ability to help change the lives and directions of many people in my community. That's important to me that that is why this work is important. The Northeast Ohio Black Health Coalition was birthed out of a – We hosted a local conversation on health disparities in 2004, here in Cleveland. And so what happened is we were the first people to host this local, effort on health disparities. And we divided, communities out into racial and ethnic groups. during these conversations, the groups were they went into rooms and decided to what they wanted to focus on, like, what do you want to focus on?
So the Hispanic/Latino community, the Asian/Pacific Islander community, the Native American community, all went into these roles. And there were people who went into another world and said, we want to talk about Black folks. And so when they came out, they came out with enough of some nonsense for me to say, we need to have an office just dedicated to the unique needs of the African-American community. And that is where the Northeast Ohio Black Health Coalition was born on 8/1/2011.
Gelise: Love it. From passion to purpose. So one translational science principle is prioritization of initiatives that address unmet needs. You just talked about some of those unmet needs. how do you use the Northeast Ohio Black Health Coalition to address some unmet needs?
Yvonka: So I think for the Northeast Ohio Black health population, our strength is being able to work with community partners, across the board to be able to help, to engage communities that are hard to reach, and translate information into a way that they understand because that hasn't always happened. So what has happened is, you know, projects come into the community with very little community input and then the community kind of feels left out, like their voice is never heard in these projects. Things get finished and they say, well, we didn't ask for that. That's not what we wanted. What we wanted was this. And so I looked at and I said, because of how I am able to pull together people and information, I can, help coalesce folks to, meet the community where they are and provide the services, in the capacity that the community needs, and then help translate it in a policy. Because at the end, if I don't do anything to change policies that disproportionately impact my community, now, I'm not doing my word.
Gelise: Absolutely. So you talked about listening to the community, hearing their voices and being that bridge, being a resource to make sure that policies are changed. How do you define trust and how have you built trust amongst the community?
Yvonka: Wow. So trust is, you know, looking at, you know, understanding how people receive information, how they perceive other folks, and kind of balancing out the mistrust, the things that have happened to cause the community to not trust folks that are coming in. I’m the community. So, you know, there's a quote that says, you know “Be with the community, you know, help them find their voice. And then at the end, they'll say they did it themselves.” And so for me, that person, they help them to be able to find their voice. And I think that that's what builds a trust is because they know that at the end, it isn't about me. It's about them. And I think we have to remember that in all of our aspects of research, and all of our community engagement pieces, that at the end of all of this, it's not about us. It's about how do we, what do we create in order for the community to do better when we leave? Because research doesn't last forever. And so, because it doesn't, you know, what are what are some of the things that we can use as earmarks that are benchmarks for long term change in communities?
Gelise: Thank you. Now, I've also heard you elevate the fact that the word equity is defined and understood differently by various people, how do you define equity and what does it look like for the work that you lead?
Yvonka: Wow. So so I think it's a whole -- So I think people define equity by their own experience. So if you have not had food then equity is to give me some food. Or to give me a sandwich. Like I'm hungry, give me something. But what happens is I think that because it's so many people trying to define something for my community, that my community has been left out of the equation. And so we have there is a, a picture that has people at a fence. It has these boxes. So it starts off the first one is, inequity. This next box is they give you a box that’s your size, and so that's equity. And then now they have one that they move the fence and the fence is justice. And so what I'm here to tell everybody is none of that is equity.
And none of that is equity because the, the not having the right box, having a box the right size, removing the fence didn't change the fact that that community is still being treated differently than the other community. So in that pictorial, the problem is the Black people are standing at a fence and then you move the fence. So now you move the fence and I'm still standing on the outside watching the other communities enjoy the game.
So my grandmother was born in 1931. In 1940, my grandmother went to a baseball game. She was nine years old. The African-Americans had to stand and watch the game, right. So that was not equity in 1940. So how could something that was not equity in 1940 all of a sudden be equity and justice? So if you really want to get to equity, put Black people in the stands, make room for us to have seats at the stand, in the stands, make room at the table for African Americans to have a voice that is true equity, making sure that people have their voices heard in all of these discussions that are going on about their community. And so in that case, make sure that Black people are part of the game. Make sure that if we if you were sitting in the stands, that we're sitting in the stands also, because I think that that's the other thing around that pictorial is that people don't understand when you're looking at it, you're looking at the people at the fence and don't realize that the people that are sitting in the stands are all white. And so change that around and you actually have equity and stop letting people hijack what equity is to you.
Gelise: Absolutely. In 2022, Black people made up 15% of participants in new drug and interventional clinical trials between 2010 and 2021, and 8.5% of participants in oncology or cancer clinical trials. We've seen the need to increase diversity in research, specifically clinical trials, in the headlines over the past couple of years and more recently in connection with the FDA's draft Diversity Action Plans guidance. In what ways has the trust that you earned and built helped advance research that the Northeast Ohio Black Health Coalition has led or supported?
Yvonka: Well, I think that because our strength is in our ability to work across these multiple sectors. So I'm able to translate things from the university to the community, and let them know where they fit in and why it's important for their voices to be there. And I think that that hasn't always happened. You know, I mean, in our community in particular. But I think that when we talk about research projects, we still have to remember that there's still this little thin balance around community engagement and research. Research is not community engagement. Research is research. Community engagement is community engagement. And so I think that a lot of times what happens is researchers say, oh, well, this research is community engagement. It's like No, you know, it's a whole different way to talk to the community about engaging them. And part of it is addressing the mistrust of the research establishment in the first place.
Being able to talk openly about Dr. Marion Sims, about Henrietta Lacks, about the Tuskegee Experiment that was not a study. It was definitely an experiment. To talk about all of the other experiments that have happened to communities of color, in particular African Americans. And not just experiments that took place 30, 40, 50 years ago, 60, 70, 80, 90, 100 years ago. But we actually have some stuff that has taken place, you know, within this lab in this century. You know, and so understanding how those things impact folks and then saying, okay, we understand that this happened because we have to admit that it happened fast, because I think that that's the other thing, is that people are like, is this going to happen to me again? But do you talk to them like I will walk you through this process? I will walk you through this process or any other any questions that you have I am here to answer them and I think it's being there for the community helps change their outlook on research.
Gelise: And what are some ways that the academic institutions and other organizations, health care systems, etc. can show that they are there for the community? And like you said that there is a distinction between research and community engagement and the acknowledgment of it?
Yvonka: Hire some Black people. So, you know, part of it is and now don't just hire housekeepers. Don't just hire your support staff. Hire people who are your administrators who are the people who are running programs, that look like the communities that you seek to serve. Because if you actually really seek to serve me, then you're going to have someone who looks like me, that’s talking to me about the things that are going on here. And so I think we had this whole thing around, if we make it 1%, if we do this 10% is make it right. Make it fair. Make sure that if you're going to talk to people about their disparities, that you're not talking about it from a second or third person, that you're bringing someone in that actually understands what's going on with the community. And that means training young people, getting young people involved, and an early age in elementary school. And then helping to walk them all the way through to get our future doctors, our future nurses, our future academicians. Like we need young African-Americans to know that there is a way this is different from what they have been seeing or what they see on TV. And I think that's like universities have an opportunity to change the dynamics that have played out around the engagement around the university.
My grandmother worked at the University in the cafeteria, and she wanted to be a nurse. Just think of what the university could have done for her to help her get into a nursing school could have changed her life, but instead she was a cafeteria worker. And in 1978, her yearly pay for the whole year working at the cafeteria ‘cause cafeteria workers worked at the cafeteria at the university, but didn't work for the university. Her whole paycheck for the whole year was $1,200. She made $1,200 for doing backbreaking work for 40 hours a week in the cafeteria. And we could have really, really changed her life because she wanted to be a nurse. We have so many young people with aspirations. I think part of enhancing research is to help the young people who have aspirations to see them come to fulfillment and then allow all of their dreams. I never dreamt that this would be me, that this would be my life. I mean, I came from a broken home. My mom, my mom was murdered by my dad. My parents were divorced. Like society said, there was nothing else for me. It was nothing else that I could offer for society. They had already painted a picture of what my life was to look like, and other people stepped in. And my neighbors, you know, my teachers, people from the community, they all stepped in and said, you got too much of a mouth for us to have you over here doing this. There’s something else for you. And I'm grateful.
Gelise: And Cleveland.com agrees! They honored you as a Homegrown Hero in 2020 for your work supporting families during the onset of the COVID-19 pandemic. How did you and your organization support members of the community during that time?
Yvonka: Hah, you don't even want to know. So, I just left California doing some work in California when we determined that something was here that we couldn't even, we had no idea about COVID. Like, what the heck is going on? From a research background and from looking at HIV and AIDS, I'm like, okay, it has to be something to address the potential of elderly people who are raising their grandkids, who have these comorbidities. If they die, what's going to happen to their grandchildren? So their grandchildren who have been raised with them and been sheltered? Because I was sheltered, I was protected, are going to end up in these systems. And how do we keep that from happening? We make sure we get them food. We made sure we get them PPE equipment, we make sure we get them dishwashing liquid, we make sure we get some games. We make sure that we give them everything they need for them to be safe in place. Right. And it's like, how do you do that with no money? And so I had this whole, you know, conversation with a higher being, like all night long. And it was like, you got to use your credit card. I'm like, no, go for somebody else for this assignment.
And so it became my assignment. And so my assignment was to use my credit card to go buy food for 125 children. And that's just the children, that's not the entire, that's not all the families. Right? that's not counting grandma, granddad or mom or dad or, we got these houses that got everybody. You got mom, dad, grandma, granddad. And so I put $10,000 on my credit card, and out of blind faith, did it the first time and asked for some volunteers. 100 people showed up. We started bagging up stuff. The next month, put the next $10,000 down. The first $10,000 have been paid off. People gave me money. I said, okay, paid that, paid it off. And then I would come to the door. We were finished. We were exhaling like, yeah, we're done with the food for the day. And they would say, it's a knock at the door. And I would go out on my front porch and it would be like 300 boxes of Cheerios where someone ordered a lot of stuff from Amazon, and it would just be out there.
And so by our sheer efforts and determination, we send out 250,000 meals in two years to disabled children and their families and I am I'm grateful for every minute of it. It helped me to be a better person and help the organization to do some work that we had already been doing, but it kind of put a spotlight on, like, they're actually really doing the work. Because doing the work is more than just saying you're doing the work is actually doing the work. And so nobody was sitting up at me at night when I was like, putting gift bags together for the kids so they could have birthdays. I could I remember one day cutting up birthday cake because I'm like, who missed their birthday while we're going through all this. Sitting at night cutting up birthday cake so we can make sure that we send out a slice of cake to every child.
And then I remember going to a home and the mother said, “we're so happy that you came to deliver today!” And, she said, “because he's been waiting to see you!”, because he saw me the first time, and then he had this thing at me, and he was autistic, aged. So he's been practicing since you left. And I walked off. “Well, you know, what do you. What's going on?” and he said, “thank you!” and I was like butter, just melted. I'm, I'm a softy. Even though in this world, you know, I think people think that I'm, that I have Kryptonite, that I'm, you know, Superwoman. But I am a softy. especially for the little ones. I don't want to see kids go through what I went through. And if I can find a way to kind of be the bridge between getting them the things that they need and help in their lives, a change, for me, unlike some of these children, I don't know what it's like to have people who support them. And so I want to be the person where if they had an opportunity to change their life, that I could be the person that supports them.
Gelise: Incredible. What you do, what you're doing, what you will continue to do is just absolutely incredible. So thank you so much for doing what you do; for doing the work. I mentioned at the top of our conversation that you are a part of the CTSC ‘s Inaugural Community Advisory Board and Community Engaged Research Network. Can you tell us a little bit about your involvement so far. And just overall, what has been your, what kind of benefits have you received from being a part of the CTSC?
Yvonka: You know, I think actually when I first came in, I said, this is about to be some garbage. And I, I don't even know if this is going to work. I might be here for a minute and then I'm out of here. But I think being in a room and getting a chance to hear other voices that I have not met up with in the community, being able to talk to them and hear them talk about the programs that they're doing, the things that they're doing in the community. Meeting folks who have a like mind is important in this work. And then meeting people who have a difference of opinion than you because I, you know, in my work, I'm, you know, most of the people that I meet, you know, they sound like me, you know, and so many folks who don't necessarily sound like me, but they come at community in a whole different way. I think that that's what this piece has brought to me is that meeting people who are my counterparts, and that they're ready and willing to help with the elimination of disparities and they help make this community whole, like they found their niche. But we need each other in order for us to do this work. And I think that that's one of the things that the CAB has taught me is that this is not something that I can do singularly, as Yvonka Hall, because I think I can do a whole bunch because I think I can wear 50 hats, but I need my other counterparts in order for me to be able to actually do this work.
Gelise: Love to hear that, that it's been a good experience for you so far. Are there any relationships or connections or even collaborations that you're looking forward to as you move into year two of your service on the CAB?
Yvonka: I know I've talked to people about some of the other work that I do outside of here to kind of, goes into the work that we do here. Like, I'm actually part of the National Environmental Justice Advisory Council for the EPA, and, I'm the Chair of their farmworkers and pesticides group. And so we have a young lady as part of the CAB that actually works in a community that works with migrant workers. And I'm like, look, I have a report that's actually going to help change their lives, you know, what can you offer to this report? Because we want to make sure that the voice of our migrant workers here in Ohio was heard, because I've heard from New York and I've heard from Texas and I've heard from Florida. And I think that that's the other thing is that because we work in silos, that we all of us, we don't get a chance to hear everybody's voice. And so for me, if I'm in a room and I get a chance, I hear somebody say “I do such and such”, I'm like, okay, tell me a little bit more. And then, working with one of the young ladies that works with the LGBTQ Center about some of the work that they're doing over there.
How does that gel with the work that we're doing with the Northeast Ohio Black Health Coalition? And then just hearing her story, you know, talking about some of the things that are going on her life. And I think that that's one of the other things is that we know that we all have these stories to tell. We get into these, places and we become part of an organization and not so much individual. And so being able to have that individual feel like what's going on, what people individually. I think one of the questions out, one of the I was like, how do you feel about today? How do you feel about the weather? You know, and you get a kind of chance to, to hear, what other people are feeling and going through. Like, I love to travel. And so, you know, they're like, where you where are you at today? You, you know, are you here in Cleveland or are you somewhere else? And I'm like, I'm somewhere else, but I'm still working, you know? So no matter where I'm at, you know, that tablet is still with me, the laptop is still with me, and I'm still on go. So I'm still on the go for Cleveland. And looking at other people and seeing them feel the same exact way has been a great experience with the CAB.
Gelise: Excellent. Also glad to hear that. So for our listeners who aren't familiar with what Community Engaged Research is, Community Engaged Research is a process that incorporates input from people who the research outcomes will impact and involves those people or groups as equal partners throughout the research process. You talked a lot about that and the importance. This involvement could include co-designing research questions to solve problems, making decisions, influencing policies, and creating programs and interventions that affect their own lives. We've invited you to be a part of the Community Engaged Research Network. What influenced your decision to join that? As you know, you and I, we have a relationship prior to my time at the CTSC. What drew you in to becoming a member of the Community Engaged Research Network?
Yvonka: You. So I have had a relationship with you because we met in another light.
Gelise: And then it was “can you be a part of this, can you be a part of this.”
Yvonka: Yeah. Can you. And, and I said but you know what I think people who are, who I look at as saying this person has leadership qualities and potential, it can actually help really change some stuff. Those are the people I want to be at the table with, because there are so many people who only look at the four walls and they understand nothing about what happens outside. And I think one of the reasons why I was willing to join Gelise is because she does understand what's happening outside. If I'm sitting at a table and you're not willing to speak up for the community then I'm done, and I'm out of the table, I'm like, “Oh, we not speaking up for Black people here? Time to go!” because, you know, my voice has always been to use it to change the community, even if it meant losing a job or losing a position. Community always comes first. And so I don't think people outside of this understand that enough about me, you know? Is that they know - they don't understand that I lost my career, for speaking out about an issue that was going on in our community and so I'm willing to go the extra mile because I'm willing to fight with King Kong about my community.
I trust you. And that that wasn't one of the other things you. I get asked a lot to be part of all types of things. And so when I look at the table, I look at whether the person at the table is willing to talk about the community, willing to break from other voices that are at the table, because so often what happens is, you know, we get to these tables and everybody that all of a sudden was loud in the parking lot, you know, they get there and nobody's talking about the communities that they came here for. And so I didn't see that with you. And so that is what brought me, attracted me to the work that you're doing. It's because I see you as, an ally in this work. And we need people who are allies. And you're young, so you're going to be here when I'm long gone. Being able to carrying on this work. And so for me, I want to help, I want to help you just as much as you can help me. And I think that that's part of the most effective community engagement, is that at the end, the community has helped me as much as I have helped them.
Module Feature: We'd like to take a moment to introduce you to our Community Engaged Research Team with a special message from Dr. Shari Bolen.
Dr. Shari Bolen: Hello. My name is Shari Bolen, an internal medicine physician, professor of medicine and cardiovascular health researcher at the MetroHealth system and Case Western Reserve University. I am co-leading with Darcy Freedman, a professor in the Department of Population and Quantitative Health Sciences at Case Western Reserve University, the new Community Engaged Research Module of the Clinical and Translational Science Collaborative of Northern Ohio. With this new Community Engaged Research Module, we aim to develop a network of community and other partners to align in our efforts to translate research into practice and policy to advance health equity, to have the greatest impact in our research on health for all populations. We need to develop and maintain trusted partnerships and build capacity within our research groups to engage with these partners.
Therefore, in addition to building a network of partners, we have developed a number of services to enhance capacity and community engaged research, including a consult service where people can get questions answered about community engaged research, we have website resources around community engaged research and team science, we have a mentoring program that's starting soon for those new to community engaged research, we have co-learning events where researchers and partners can come together to learn more about specific community engaged research topics, we have community engagement studios for those interested in getting community input on their research, and voucher awards of up to $7,500 in funding to help with preliminary community engaged research efforts needed to obtain larger scale grant funding. If you are interested in learning more about how best to use some of the module infrastructure and resources, I encourage you to visit our website linked in the description, and submit a SPARCRequest to meet with our consult team, who can guide you through how we may be of service.
Gelise: Let's talk a little bit about your future academic community collaborations in terms of research, you've recently applied for, and were awarded a CTSC voucher to support a research project that focuses on COVID-19 with the CTSC's Principal Investigator, Dr. Grace McComsey, an internationally known HIV researcher and leader of one of 15 nationwide REsearching COVid to Enhance Recovery or RECOVER hubs. And you mentioned your RECOVER service. Black people make up 3% of participants in major COVID-19 vaccine clinical trials, while representing 21% of COVID-19 deaths. What can you tell us about your project and the importance of academic community collaboration to advance health equity?
Yvonka: So first, I can tell you that the RECOVER hub, I’m part of the RECOVER hub, and I actually chair the Health Equity Committee, I've actually worked into some other pieces. One of them was around, the neurological impact around COVID. But when we talk about this 3%, it’s 3% nationwide. But when we start looking, diving into what's going on in these individual cities, we have very few African Americans that are participating in Recovery studies. Although we look across the board at the number of African Americans who have been disabled as a direct result of COVID or have lost their lives. So on a personal note, I lost more than 65 friends with COVID during COVID. 65. 6-5. And these are people who are my age. You know, they graduated from high school the year before me, the year that I graduated, the year after -- they're gone, they're gone. And so, they when we talk about the years of potential life loss, like the years of potential loss, knowledge loss for our community, when we start losing people in our young, like the knowledge that they're able to pass on to their children and they're gone, you know, and so, looking at the looking at some of the reasons why African-Americans aren't in the study is what drove me to this whole thing. And so my piece is addressing implicit bias in medical settings and the impact of Long COVID, clinic and clinical trial access in African-American communities. That for me was important. I'm sitting on Zooms. I see very few African-Americans. Usually it's like me and two others, and so I'm like, if this is what this looks like, this RECOVER meeting, then what does a Recovery clinic look like?
And I'm sure it looks like one of the cities I visited today. And so for me, that we know that African-Americans, who are coping with undiagnosed or unrecognizable Long COVID symptoms and the importance of working with them to reduce, some of their barriers to timely, Long COVID access in clinical settings, like, I think the more we can get them involved in research studies to find out what's going on, the more we can help with other COVID things that, ‘cause COVID hasn’t gone anywhere, I think that's the other thing is that we're like, oh, COVID is gone. And it's like, where did it go to? We have, you know, a new version of COVID, FLiRT. And so we look at the number of people who have COVID currently, and our numbers look like what they looked like a couple years ago, but we're really still not talking about it. And so or just the impact, the medical impact, and why it was important for me to have this.
I'm a COVID Long Hauler. So if y'all see I'm having a hard time remembering words. And part of that was the whole thing around Long Haul, you know, is that my my piece was brain fog. but I also had an uncle when we all had COVID together. Me, I was the ten of us, who were together, had COVID. Three of my young nieces and nephews are autistic, and I wonder if it was directly related to COVID because they didn't start speaking when they should have. And I'm like, did they have brain fog and we don't know how to define it in children? That's one. The other is I had an uncle who when we had COVID, I talked to him one day and his arm was fine, it looked like mine. And the next day he was holding it and I said, “well, what's going on with your arm?” And he said, “I don’t know, you know, it's kind of hurting.” And I said, “well, you know, you need to go to the hospital.” He said “no, I'm not going.” The next day, his arm was in black, and the next day his arm was amputated. My uncle lost his arm from COVID because of the blood clot. There were people who lost toes, who lost fingers, who lost their sight. We don't talk about that. And so what I want to do is make sure that the people who have the stories that are untold, that they’re able to tell it and they can't tell it unless they're actually in a clinic to be able to tell the story of what's going on with them, so that we can help them to be able to to extend their life. And so that's why, this piece is so important to me.
Gelise: So what advice do you have for community members who would like to be a part of research? I mean, the stories that you just told really amplify the importance of being a part of clinical trials.
Yvonka: Yeah, I think to talk to them and say, let's help to alleviate the fear. If that means I have to walk you through it, if you have questions and you want to ask me about, you know, that I'm here for you. I just talked to someone and they said, you know, when do you turn off? And I said, you know, I don't actually turn off. You know, I've actually had people who would call me at 2:00 in the morning and say, oh, Yvonka I got a question. And I'm like, okay, well, what's the question? but I think that being here for people, to help them as they're kind of going through this journey.
‘Cause this is the journey. Being involved in a medical setting for African-Americans who've been so distrusting of medical settings and being involved in a research setting which has meant even more distrust is very hard. And so the, the stressors are there. How do we alleviate those stressors? How do we make research, not only important, and valuable, but fun for people who are, who feel like they're going under the knife because that's what people feel like. You know, if they're like, “oh, you want to sign up for this study?” And they're like, “uh-uh I don’t want to do it.” Okay, well, let me explain a little bit about it to you. And so for me, I have never had that problem. When I actually started off doing this work 30 years ago, 30 years ago, I was doing HIV research, and we wanted to do this whole piece around educating folks about the dangers around HIV, but encouraging them to get a test. My testing rate was 100%. The rate of follow-through at 3 and 6 months later, everybody else had dismal numbers and theirs were and mine were like 90, 95, 98%. And they said, well, why do your numbers look like, look different from everybody else's? And I said, because I meet people where they are, like, I'm like, I'll meet you at the McDonald's around the corner from your house. If I can't meet you at home, I'll come. I'll come to your work. We can come. We can come sit in the car. We can go sit at the lake, you know?
And then I would have folks where I would go to their house. And, you know, most people, when you go to their house and they offer you a drink, you say, I'm good, I don't want anything. And I remember going to a patient's house and she said, “I'm get ready to fry some chicken.” And I said, “you know how to cook?” And she said, “oh yeah I know how to cook.” I said, “okay, well, let's, let's, let's try this out.” And after that, every time she came to, she was looking for me. “Where’s Ms. Hall at, where’s Ms. Hall at?” And they say “your girl is here looking for you. She's here looking for you today.” And, she told me things that she would never have told her doctor. And so I was able to help with a better, with a better health outcome for her because I was able to go back to our doctor and say, look, this is what's going on. This is how you can better help her.
And I think that that that we have to understand that medical setting isn't just the doctor in the patient, it's the whole system in the patient. And that's why when I worked at the hospital, when I would work with residents, I introduced them to everybody they knew the housekeeping staff, they knew the staff that was, you know, doing the labs. They knew everybody. And they said, well, I don't have to know everybody. I said, because the patients know everybody. And the patients talk to everybody, because these other folks here live in the communities with these patients, and they're going to talk to them first so they know more about your patient than you do. And so they're able to come tell you some stuff that's going on with your patient. And they help with better patient care. And so what we saw was my program was phenomenal because, you know, they're like, look, we can't give you any more money because you spend everybody else's money in this research project because nobody else has money, because every week you coming back going “Okay. I'm finished. I don't have any money left. Like all my stuff is gone.” and everybody else is going: “You saw 50 people already?” and I'm like, yeah, my office is busy every day. So I think we just have to be human about it. And I think that that is the whole thing is that I’m me no matter what setting I’m in. I can't change who Yvonka Hall is.
But, you know, I think the other thing is that some people try too hard to be people who they aren't. But what we do know is that, you know, studies have shown that although if you are not of that community, if you're working with the community and you just kind of help understand the things that are going on, people understand it, that you're trying, and all we can do is try.
Gelise: Absolutely. So what advice, since you've worn both hats as a researcher and as a community member, would you have for our academicians, researchers, physician scientists as they try to infuse more research health equity into their programs and studies, and across their research teams? So you mentioned workforce development and how representation was important there. What is one thing that they could do today that would help increase diversity in research?
Yvonka: Well, well, I talked about workforce development. I talked about bringing students in, you know, bringing them in when they're young. I think it's just being themselves, you know, trying to work with the communities that some of them have never been in the community besides the work that they're doing. And so not wanting to say, I know it all, but going in and say, how can I help you to make your community a better place? What can I do for you that'll help change the conditions that are going on in our community? And not saying I know everything that can change our community, because that's what usually comes in, is I look, I came here with a cure for you, and it's like, well what’s wrong with me? You know? And I think it's, you know, not telling people that, oh, well, this is what's wrong with your community. It’s, you know, can I help your community to be better? What's not working? What can we do to help change the things that are going on the community from a research standpoint, from a policy standpoint, like what are some of the things that we can put in place to help your great, great great grandchildren? If we can do it for you, what can we do to change the conditions for them?
Gelise: So what can we do for you? What are some upcoming engagement opportunities? How can our listeners support the Northeast Ohio Black Health Coalition and all of the work that you do, research policy and beyond?
Yvonka: Well, we do lots of community, activities and engagements. They're on our website. So our website is www.NEOBlackHealthCoalition.org, or they can email us at info@NEOBHC.org. And we have an annual conference that we do this year. It's it's always “The State of...”. And this year is The State of Reparations in the African-American Community, because that's a topic we don't all talk about. So it's an opportunity to talk about what does reparations look like in a health setting. Like when we talk about health care, what does it look like? And so it's an opportunity for people to just kind of understand some of the things that are going on and some of the voices from across the country.
Gelise: Yvonka, thank you so much for taking time to talk with me today to give our listeners all of the insights. Make sure to visit the websites linked in the description to learn more about research, equity, accessibility, diversity and inclusion, or READI; research health equity and our upcoming programing and webinars; community engaged research; and more about Yvonka Hall and the Northeast Ohio Black Health Coalition. Yvonka, thank you again.
Yvonka: Thank you for having me.
Outro: From Research to Real Life is brought to you by the Clinical and Translational Science Collaborative of Northern Ohio. The views, recommendations and opinions expressed in this podcast are those of the presenters and not necessarily those of the CTSC or its partners.