Episode 72:
Yale Cultural Ambassador Program: Access to Clinical Research and an Approach to Advancing Health Equity
Dean Nancy Brown, Marna Borgstrom, Tesheia Johnson, Dr. Marcella Nunez-Smith, Rev. Leroy Perry, Rev. Elvin Clayton, Sandra Trevino-Ranalli, Cheila Serrano, Dr. Paul Taheri
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In this episode of Fireside Chat, we learn more about the Yale Cultural Ambassador Program and its success in accelerating minority participation in the Yale School of Medicine’s clinical research.

The background, of course, is that minority participation in clinical trials is a long-standing, national challenge. Minority communities are distrustful of clinical research due, in part, through misguided past research trials such as the Tuskegee Syphilis Study. Further, communication with minority communities about science and research has been sparse and not generally creative or thoughtful.

The Yale Cultural Ambassador Program was designed to increase minority participation in clinical trials, which it has accomplished beyond expectations. Furthermore, it has bridged the minority and scientific communities and there are open lines of communication about COVID, vaccines, and youth exposure to science and medicine.

Transcription

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Leroy Perry 0:03
And then we learned how minority people were disproportionately not a part of research studies and clinical studies. We’ve learned that African American men die two times to their counterparts from prostate cancer. And we didn’t realize that until we had gotten a part of this collaboration with Yale. And then the question becomes, “What do we do about it?”

Gary Bisbee 0:27
That was Reverend Leroy Perry, a founder of the Yale Cultural Ambassador Program 11 years ago. I’m Gary Bisbee and this is Fireside Chat with a special program on advancing health equity and how we can address the pervasive gap in access and awareness of health and care. I first heard about the Yale Cultural Ambassador Program and its success in accelerating minority participation in the Yale School of Medicine’s clinical research. The background, of course, is that minority participation in clinical trials is a long-standing national challenge. Minority communities are distrustful of clinical research due in part through misguided past research trials such as the Tuskegee syphilis study. If you’re not familiar with the Tuskegee study, you’ll be surprised when you look it up. Further, communication with minority communities about science and research has been sparse and not generally creative or thoughtful. Get ready for a welcome surprise. The Yale Cultural Ambassador Program was designed to increase minority participation in clinical trials, which it has accomplished beyond expectations. Furthermore, it’s bridged the minority and scientific communities and there are open lines of communication about COVID, vaccines, and youth exposure to science and medicine. Dr. Marcella Nunez-Smith, associate dean health equity research, Yale School of Medicine, and co-chair of President-Elect Biden’s COVID-19 advisory council and chair of the Biden White House task force on health equity, observes that progress is a daily walk and she speaks about shared obligations.

Marcella Nunez-Smith 2:06
We recognize our obligation to the communities that surround us, but we also recognize that there’s expertise that we need from the communities around us in order to make the science better.

Gary Bisbee 2:18
How can the Yale Cultural Ambassador Program be expanded to address the advancement of health equity nationally? Dr. Paul Taheri, deputy dean, and CEO Yale Medicine speaks about next steps.

Paul Taheri 2:30
I think in terms of other academic institutions or just other institutions that want to develop such a program, we are very much interested in expanding it. And our goal is to develop this in a way that we can export it to other institutions so that they can follow a similar path that doesn’t need to be identical, of course, but understand our framework so that they can utilize that in their own communities.

Gary Bisbee 2:54
Dr. Nancy Brown, Dean Yale School of Medicine seeks counsel from the ambassadors.

Nancy Brown 2:58
I’ve come to rely on the ambassadors even for things like thinking about our response to the aftermath of the death of George Floyd and others. I reached out to them for their input as we were messaging around the school. They participated in our recent revision of our mission statement for the School of Medicine. We thought it was very important that they be engaged in that.

Gary Bisbee 3:21
I’m pleased to be joined today by leaders of the Yale Cultural Ambassadors Program. You’ll hear from Ambassador founders of the African Methodist Episcopal Church, Junta for Progressive Action, Yale New Haven Health System, and Yale School of Medicine. First, Dean Nancy Brown, Yale School of Medicine, and Marna Borgstrom, president and CEO Yale New Haven Health System, both previous guests on Fireside Chat, will share their views of the Cultural Ambassador Program.

Nancy Brown 3:50
The Cultural Ambassadors Program is a wonderful partnership between the African Methodist Episcopal Zion Churches of Connecticut, which is one of the oldest African American congregations in the country, and Junta for Progressive Action, one of the oldest community based not-for-profit groups in the city of New Haven focused on Latino advocacy with Yale School of Medicine. It is 10 years old and the intent of the partnership has been to increase the participation of minorities in clinical research. And it’s been incredibly successful. The ambassadors have collectively taken a minimum of 40 hours of training and research in clinical trials, but most of them have now taken up to 200 hours and perhaps more articulate than some of our researchers about the value of clinical research. And so it’s been just a joy.

Marna Borgstrom 4:46
The Yale Cultural Ambassador Program is a really creative idea that came out of the Yale Center for Clinical Investigation. We were an inaugural partner in that with Yale Medicine and the Yale University and we have been active supporters of the Yale Cultural Ambassadors Program. I think that we’re making progress, is what I would say. If you understand, many people think of Connecticut as this very waspy, wealthy state if you don’t live here. But in Connecticut, we have 3 of the top 50 poorest, midsize cities. New Haven and Bridgeport are 80% minority populations. Minorities have a historical fear of being used as guinea pigs in clinical trials. Minorities in general have put off access to important healthcare services. So I think that the goal of the Cultural Ambassadors Program is to get more minorities comfortably into appropriately run clinical trials and also to enhance communications about COVID, about healthcare, about research, because to the extent that we can help those doing research understand the effects of their treatments and their pharmaceuticals and other things on all people, they will be better accepted, hopefully, and more effective.

Gary Bisbee 6:18
Tesheia Johnson, guiding light of the Cultural Ambassador Program and Deputy Director and COO, Yale Center for Clinical Research, Yale School of Medicine.

Tesheia Johnson 6:27
How can we change the perception of the institution, change the attitudes about clinical research? And the answer at the time was shocking. It was, there isn’t anything that Yale could do. The message would have to come from an already trusted voice and they recommended the community. And that’s really where the idea was born out of that focus group. In the African American side of the focus group, they suggested that the church, although not perfect, would be a good place to start because in general, religious leaders are well respected in the community. And in the Hispanic/Latino focus groups, they recommended either the church or an organization called Junta for Progressive Action. So we decided to have a blend. We would have the church on the African American side and Junta on the Hispanic/Latino side and that was almost 11 years ago now. That night, I was leaving the focus group and it’s really just like those things you see on TV. We were behind the mirror and all of this and we were getting all of this information and I was quite pregnant at the time. So I decided on the way home from the focus group to call my uncle who was the presiding elder with the AME Zion Church, and I thought, “Oh, it’s a shoo-in. Just get my uncle to bring in some leaders and we’ll be all set on that side.” So I said, “I need a favor.” And his first response was, “Anything for you, sweetheart, what do you need?” thinking it was probably something related to the baby. And I said, “I need to talk to you about clinical research.” And he’s like, “No way am I being a guinea pig for you.” So we continued to talk on the way home and he agreed. He said that he would bring a group of ministers that at least might be open to the idea. He said, “But you’re going to have to convince them. I don’t think we’re gonna do this, but we’ll meet with you.” And that’s how it got started. But yes, my own uncle turned me down at first.

Gary Bisbee 8:14
Dr. Marcella Nunez-Smith speaks about the Ambassadors program and its foundation in communities.

Marcella Nunez-Smith 8:20
I had the great opportunity recently of meeting with many of the ambassadors over Zoom as we all are doing now. But over 60 ambassadors came. We had a conversation that lasted over an hour talking about vaccine information/misinformation. In my role, incredibly valuable insights each of those leaders is bringing from their constituents where the questions are around things like hesitancy. But also, just to be able to have deep faith and confidence knowing that each one of those ambassadors, highly informed with correct information, many of them participants in vaccine clinical trials actually, knowing that they’re going into their communities to really talk about safety, efficacy, the new vaccines, just such a unique and powerful venue.

Gary Bisbee 9:06
We’ll hear next from two founding pastors, Reverend Leroy Perry, pastor St. Stephen’s AME Zion Church, and Reverend Elvin Clayton, Walters Memorial Church.

Leroy Perry 9:16
We met for almost a month where we talked about all of these things and then we learned about some safeguards and IRBs. And then we learn how minority people were disproportionately not a part of research studies and clinical studies. We’ve learned that African American men die two times to their counterparts from prostate cancer. And we didn’t realize that until we had gotten a part of this collaboration with Yale. And then the question becomes, what do we do about it? How do we get people to trust the medical community having understood the Tuskegee experiment and Henrietta Lacks study and the Medical Apartheid? What we decided to do, we said what we need is training. It makes no sense for us to go back into the community ignorant. So we demanded a certain amount of training. What we’re trying to do now is help with the messaging, help with the recruitment, help with people taking charge of their health, and run a fatherhood program here in Connecticut, in Waterbury with new opportunities. I told one of my dads when the Pfizer trial was coming out, I said, “I’ve some good news.” I said, “They’re recruiting for the Pfizer study of the COVID-19.” I said, “You want to be a part of this. I was excited.” And he said to me, “Doc, don’t do it.” He said, “Wait until everybody else does it, wait until they got some positive responses to it.” And so I said to him, “My brother if I wait, and if we wait, we may not be around to see the final results of the study since we are disproportionately affected.” So I tried to work that message into him. But then I realized that it was part of his instinctual cultural bias in terms of, “Medicine is not going to help me. I’ve got to wait. I can’t trust them.” So what I did was, I enrolled myself in the study so that he could see and others could see that I trust them. I trust the study. And if they trust me, maybe they can enter the study as well. One of the things that we’ve come to understand, just recently, with this Yale YCCI program that we’re in is that getting messages out to young people is not as easy as we would hope it would be. And I’m not even thinking that the young people are basing their understanding on the Tuskegee study. I just think that there is a lack of apathy for taking charge of one’s health.

Elvin Clayton 11:53
I don’t believe I had a dream. I just heard from Tesheia Johnson and the staff that there was a need for people of color to get involved in clinical research. The numbers were so low. And she thought that we as pastors could help our people in this area. And we want to know, “Well, how can we help?” She said, “Well, you are people in the community that people trust.” They trust us with their children at baptism, we marry sons and daughters, and we counsel, and we bury their loved ones. So there’s a real deep connection with pastor and people. So that was a decent thought. And that was the foundation that helped us to launch forth.

Gary Bisbee 12:51
Now two founding members, both connected with Junta for Progressive Action, Sandra Trevino-Ranalli, former executive director, and Cheila Serrano, director of Junta 360.

Sandra Trevino-Ranalli 13:03
I think really, initially, I think it’s always too important the message and the messenger. I had a colleague from Yale come and reach out to me and said, “Well, Yale’s interested in forming a partnership with community members about clinical trials and research.” And I said, “Oh, well, I’ve heard it before. I’ve been at the table prior, so I’m not quite sure we’re interested at this time.” And they said, “Just do it, just go, you never know.” And because of that colleague convincing me to go and that it did appear that things were going to be different this time. So I agreed to one meeting, that was it, because I really didn’t think it was going to go much further than that, because I had been in so many other meetings. And so I think from there, after meeting with Tesheia, and really how this partnership was going to be formed, it wasn’t even formed yet. And so that was very enticing. So then I agreed to additional meetings. And then when it was really that bilateral, bidirectional kind of partnership, I said, “I think this can actually work.” The trust took a while to build with Yale, but when it comes to trust and relationships and teams and working, it’s always going to take a while when it’s worth it. It’s extremely important to be a part of this partnership for several different reasons. I think one of the things that we have to think about is the community and the misinformation, the misconceptions, and the myths about research that there has been due to historical unethical practices out there. And I also think that tackling those with Yale’s, with individuals with experts in the field of medicine and interventions was extremely important to bring that knowledge to the community, to be able to provide education and information to individuals that could then make up their own decisions of whether or not they want to participate. I recently was interviewed by the hospital and the individual that was interviewing me was talking about, “Is their health without health equity?” She was really talking about the health of a community and I think that’s where the focus continues to be is trying to ensure that the community was fully aware of research and clinical trials and access to just not the trials, but also healthcare, specialized care.

Cheila Serrano 15:29
Older, they’re more open to the conversation. When I talk about it some of them, “Oh, how can I help? Oh, definitely, like I want to know more information.” But also the seniors are more open, like, “Tell me more I want to participate today.” We’re talking also about having those monthly meetings that we connect, that we talk with a researcher. We’re talking about expanding that to our community and having those meetings and have our community members join. Our social media, like I said, we’re more active. So I’m trying to see, we have this segment called Cafecito con Junta, familiar of what the church is doing as well, that we get to in social media, like invite a doctor or researcher and connect our partnership. We have different ideas for this year that we’re doing, especially now that we’re more on social media now that physically our house is closed.

Gary Bisbee 16:19
Tesheia and Reverend Clayton discuss clinical trial participation results.

Tesheia Johnson 16:23
It’s been incredible. When we first started this program, we knew we had a problem. If an investigator or one of our faculty really concentrated on the effort, if they were lucky, they would have maybe 2 to 4% of their entire accrual being from underrepresented minority populations. Right before COVID we actually hit a high of 27,000 participants in clinical research in a single year, with a little over 30% coming from underrepresented populations. And where the ambassadors were specifically engaged in a study, we’ve had up to 92%. When they go to work for a study, they go to work. And so most studies are somewhere falling between the 25 to 80% when the ambassadors are directly engaged. So it’s been incredible. And it’s very clear that once they become engaged that it changes the dynamics. Even in the recent COVID vaccine study, we were one of the higher percentage sites. We had 41% of our total participants in that study coming from underrepresented populations.

Elvin Clayton 17:25
Fortunately, Yale has done a marvelous job in that area. Dean Brown, Tesheia Johnson, we had townhall meetings every week during the infancy of the Coronavirus. And people’s community could come on and ask questions. I mean and these conversations, it helped educate and calm the nerves of many people. In a sense, Yale built the frame of the bridge and the ambassadors paved the way so that the hospital and the community can go back and forth to work together for the common good of all of us.

Gary Bisbee 18:12
Tesheia outlines how the Ambassador’s Program is sharing information about COVID with their communities.

Tesheia Johnson 18:18
I think COVID actually put us to the test. A lot of the activities that we did from the Ambassador’s Program are really face to face. That was the preferred method of engaging the community and COVID forced us to change that. So in the beginning of the pandemic, the community leaders were actually coming to us and saying there’s so much information out there, misinformation out there about what we should be doing. Should we be holding face-to-face sermons still? What should our cleaning procedures be if we are doing that? What kind of precaution should we be putting in since there wasn’t state and national guidance at the time. And so they were really dependent on our health system leaders. And later, we partnered around COVID precautions such as mask distribution and other kinds of things. So it shifted gears from being focused on clinical research to really health information. And now they’re partnered with the medical practice and the health system around making sure that everyone understands it’s safe to come to the hospital. If you think you’ve had a stroke, you shouldn’t wait. If you think that you’re having heart issues you need to come. If you have diabetes, your diabetes still needs to be controlled, you need to keep your appointments, even though they might be virtual. And so they’ve been really instrumental in helping the community really think about ongoing chronic health issues and emergent health issues during COVID. And we’ve been a source of information for them.

Gary Bisbee 19:42
Reverend Perry introduces the Young Ambassador Program, which includes younger members of the communities in science, healthcare, and research.

Leroy Perry 19:50
The Young Ambassador Program is just starting. They have completed 6 hours. We won’t usher them in fully until they’ve had at least 30 hours. Then they will help us with messaging, recruiting, talking to researchers, and I think it’s going to be great. I have also tried to get Yale to look at the possibility of recruiting earlier in minority populations for individuals to go into the field of medicine, any form of medicine, whether it was public health, whether it was phlebotomy, medical school, ophthalmology, cardiology. I think that African American communities and minority communities have been excluded from this. And I think that the only way that we can change or rectify this is to build some bridges and supports to start young, in high school, children who have an aptitude for math or science, or medicine. We need to work with them now. Part of the problem with people going to the doctor is they don’t trust the doctors because the doctors don’t look like them. They don’t come from their neighborhoods. And they may have implicit bias about, “Oh, well, I guess you’re okay.” But if they knew us from our history, they would know that sometimes we lag behind because we are suspicious and you need to sometimes help us take charge of our health.

Gary Bisbee 21:19
Dr. Paul Taheri discusses expanding the ambassador’s program nationally.

Paul Taheri 21:23
It is our hope that we can actually expand this beyond the borders of Yale. I think there are several aspects of it. The first thing we do think is very important to maintain the Yale program and that is the Young Ambassadors Program. And that is really taking recent graduates from college and engaging them in the program to understand it and they take about a 40-hour curriculum with us, and then they actually continue to foster the relationships. So it’s a way of maintaining, sort of injecting youth into the program so that we have a continuous relationship that’s ongoing with the members of the community. I think in terms of other academic institutions or just other institutions that want to develop such a program, we are very much interested in expanding it. And our goal is to develop this in a way that we can export it to other institutions so that they can follow a similar path, it doesn’t need to be identical, of course, but understand our framework so that they can utilize that in their own communities.

Gary Bisbee 22:23
Dr. Nunez-Smith and Dean Brown wrap up today’s special program.

Marcella Nunez-Smith 22:29
One of the key features of community engagement has to be a sustained partnership that is genuine, that is respectful, that is bidirectional in its very nature. We have to confront, as do many other institutions, perhaps having not done things properly in the past. A lot of helicopter research, people not understanding, not getting the results back, not understanding how the research really has been to the betterment and improvement for themselves, their families, the broader communities that they’re a part of. And so that’s something we have to overcome, but that’s a daily walk. Some of the initial struggle was really around a healthy degree of skepticism from community members, dare I say, even from ambassadors and others. How are we showing up in this work as Yale? And it has been just an incredible journey. It’s some of the most important work to say, we are here, we are committed, we are invested, we’re not walking away. We recognize our obligation to the communities that surround us, but we also recognize that there’s expertise that we need from the communities around us in order to make the science better.

Nancy Brown 23:43
I’ve come to rely on Ambassadors even for things like thinking about our response to the aftermath of the death of George Floyd and others. I reached out to them for their input as we were messaging around the school. They participated in our recent revision of our mission statement for the School of Medicine. We thought it was very important that they be engaged in that. I would love to see increased funding to enable us to grow this program and make it even more self-sustaining.

Gary Bisbee 24:10
Fireside Chat with Gary Bisbee is a Health Management Academy podcast produced by Think Medium. Please subscribe to Fireside Chat on Apple Podcasts or wherever you’re listening right now. Be sure to rate and review Fireside Chat so we can continue to explore key issues with innovative and dynamic healthcare leaders. In addition to subscribing and rating, we’ve found that podcasts are known through word of mouth and we appreciate your spreading the word to friends or those who might be interested. Fireside Chat is brought to you from our nation’s capital in Washington, DC where we explore the strategies of leading health systems through conversations with CEOs and other interesting leaders. For questions and suggestions about Fireside Chat contact me through our website firesidechatpodcast.com or gary@thinkmedium.com. Thanks for listening.