Dr. Robert Winn discusses developments within cancer research, cancer disparities, and why community engagement is important.
Transcription:
Caitlin Whyte (Host): The last half-century has seen a wide range of cutting-edge advancements in cancer prevention, screening, diagnosis, treatment and survivorship. The nation’s cancer centers – the 71 elite medical institutions designated by the National Cancer Institute for demonstrating excellence in addressing the nation’s cancer burden through research – have led the way in advancing scientific discoveries into new standards of care.
But access to these cancer breakthroughs has not been equal among all Americans. In this episode, Dr. Robert Winn, director of VCU Massey Cancer Center discusses what exciting developments are on the horizon for cancer research and care in the 21st Century. He explains the potential for community-engaged cancer centers to reduce cancer disparities and ultimately make a bigger impact on the communities they serve.
Welcome to Healthy with VCU Health, where experts from VCU health share their knowledge, cutting-edge research and the latest innovations to help you achieve optimal health and wellness. Take control of your health. I’m your host, Caitlin Whyte.
So you joined Massey Cancer Center less than a year ago, Dr. Winn, as its new cancer center director and have been pretty vocal about your vision for a community-engaged cancer center. What does a community-engaged cancer center entail?
Robert Winn, M.D.: Thank you for that question. That really is the foundation of not only my vision but the foundation of what I’ve been trying to do throughout my entire academic and medical career.
I'll unpack what I mean. We have talked for a long time about the bench to bedside model. What that means is our scientists find a cure in their wet laboratories or find some miracle molecule, and then that cure and molecule get to the patient bedside.
The problem with that model is if you cannot get to the bedside then you don’t benefit from that advancement. And that is probably one of the contributing factors to the disparities that we have seen, not just now, but the ongoing disparities we’ve seen for many decades.
A second part is that there is power in having the community involved in helping you to refine your scientific questions and clinical trials. For example, we have actually had someone say, “Yeah, if you gave me that kind of drug, it might save my life, but you know, I’m not going to take it because my community doesn’t believe in that or there is no way for me to get transportation to access the medicine.” So the medicine is not useful for that community, although it may be for some. My focus has been on trying to get involvement from the community by thinking of it as a people to pipette model, where we look at what’s happening in our communities and design our research accordingly.
And now, given the big data that we have, we have multiple opportunities for looking at more precise data about communities and then developing more precise interventions to really improve the health of those communities. And that is one of the things that I think in the 21st Century modern-day cancer centers can do better now than they’ve ever been able to do in their past.
Host: Now, tell us more about that community engagement. Why is it so important?
Dr. Winn: Well, first of all, let me explain that community engagement is different than what most people think. I’ll define what it’s not: it’s not outreach. It’s not just simply going into communities and educating them about cancer.
It’s not just putting up posters or having a booth where they come and get information about screening – that’s community outreach. Community engagement is bi-directional. It means we’re engaging a community by not only giving them information, but by having them give us information. And that’s the biggest piece that people miss. Engagement can be the foundation for which our navigators and others are able to facilitate not only information about the importance of clinical trials but facilitating folks getting onto clinical trials.
So I think that when we think about community engagement, we have to understand that there is a science behind it and there is a real benefit to it. You’re engaging the voices of the community, and that really does have an impact.
One example for me at VCU Massey Cancer Center is that we have had our traditional advisory board that raises money for us and we have had a community council, but I’ve now established a director’s council. And that council is made up of people throughout the different parts of our community (catchment area).
That council is meant to give me information about what’s happening in the community right now and for the community to know what’s happening in our cancer center and to try to align what their issues are and what the cancer center is able to deliver on. The goal is to deliver better cancer care throughout the community and our catchment area in Virginia and to reduce the cancer burden.
Host: Now, when we're looking at cancer disparities, what are some factors that contribute to those gaps?
Dr. Winn: Well, the interesting thing is that the factors that exist in 2020 are also the factors that existed in 1980, in 1965, in the ‘50s. The same factors are what W. E. B. Du Bois wrote about in 1899 in the Philadelphia Papers.
These disparities are frequently built on social structures; for example, lack of education, housing issues and economic inequities. And all of the things that we are more aware of now than we probably were even just two years ago, but they were always present.
We frequently think about health disparities, and we almost blame the people living in those underserved communities for their plight. I want to change that narrative and say that we have to look at the structures that set up those disparities.
Host: Now you touched on it a bit in that last answer, but can you tell us more about how this community engagement will help with those health disparities in your community?
Dr. Winn: I’ll give you a concrete example. During the COVID period, we had a heart-wrenching thing happen in Virginia.
The story is that there was a well-known, well-beloved faith-based leader that in early January or February [2020] essentially said, “I’m not going to change the way I do business because, you know, the reality is all you have to have is faith. I don’t believe in the COVID virus.”
Unfortunately, he died and so did several other people from his congregation. The story was covered on CNN and everywhere else across the country. That was a wake-up call. To a number of people it said that this virus is real. But here’s a question: Where were most of the faith-based leaders who were part of what I call “the anchor institution network”?
If you think about anchor institutions like libraries; libraries were closed. Schools were closed. The other important anchor institution is the faith-based community, and we recognized that early. What was happening to many of these ministers and many of these folks throughout the state of Virginia is that they were getting conflicting information. They were getting information that didn’t make any sense. They were getting information early on that said African Americans don’t even get COVID. Where was their reliable information coming from? It wasn’t coming from the television. It wasn’t coming from the news.
This is where engagement matters. In March we established a Facts and Faith Friday in which we meet with African American clergy every Friday for an hour to discuss issues that are evolving, not only with COVID but also with cancer and other health concerns. Lo and behold, what’s happening as a result of that meeting is that we have almost 300 ministers and faith-based leaders that are saying that when the COVID vaccine comes, they’ll get first in line to take it.
Why does that help? Because when you have communities that, rightfully so, distrust the medical community and scientists, who are they going to turn to? They’ll turn to people that they trust. So what we’ve done in this program, which now includes multiple churches, is give reliable information from our experts at VCU and bring consistent expertise and expert information from the Virginia Department of Health.
These ministers have been essentially deputized to carry information, not only back to their congregations, some of which are quite large, but also to the community.
How does it affect cancer? We heard that as a result of this program, people with cancer who had been afraid to come into the hospital and to the clinics because of COVID are now going there to get care. People who hadn’t been getting screened for cancer are now getting their screenings.
Do you know that those people within that faith base are now starting to plan a campaign about screening? That’s engagement, right? Most cancer centers think that when we come up with a great idea we can just give an edict and it will happen.
It’s going to happen, but it will not reach to the East End of Richmond. And in fact, they won’t even trust it. What I’m saying is that engagement matters now more than ever. We need to show up and be consistent with our presence in the community, because that will ultimately give us the biggest benefit.
We’ve also started an exercise campaign that most of the ministers are running. Why? Because as we’re waiting for the COVID vaccine, the data’s coming out that shows that the people who are healthy get through COVID better.
We’re also talking with them about clinical trials. They are now understanding that clinical trials actually do matter and that the reason why we were able to do things during COVID was because we had clinical trials.
That’s only one-half step over a jump to think about what’s happening with cancer. Because we’ve been dealing with them on a weekly basis, they are now so much better prepared to say, “You know what, doc? How do we help you with getting people to better understand that clinical trials are helpful for us in cancer too?”
You couldn’t do that by just sitting in an office and saying, “Well, let’s engage the community.” That’s real engagement.
Host: I guess that leads me into my next question and wrapping up here. I mean, how do you garner that trust and get the community to then engage back with the Massey Cancer Center to help with all this research?
Dr. Winn: Well, with communities, there are two things I know for sure. You can’t do the parachute – you can’t do that drop in and then drop out. Second, you really can’t build your relationship with the community just on a grant. It needs to be bigger than a grant. So I always talk about the arc of engagement and what happens when the grant ends. How do we continue the relationship with the community? Instead of saying, “Hey, I’m going to be with you,” but then the grant runs out in 18 months, and all of a sudden, you’re no longer there. That gives even more distrust in a community. So I think about how we could do it better. We need to think about it just like we think about other strategic plans. How do we strategically be interactive with our communities over an arc of time? Maybe the arc can be over five or 10 or 15 years, but let’s develop a plan about how we are going to get involved with those communities.
And the second thing is to be consistent in our showing up. Because the truth of the matter is that, of all things, that is probably how you garner trust. People may not trust you the first time they see you, but over time, if you show up and you’re consistent, people will trust that you’re authentic in wanting to help, and they will likely wind up actually helping you.
Host: Absolutely. Well, Dr. Winn, thank you so much for this not ironically engaging conversation. Is there anything else you want to add to the conversation that we didn’t touch on today?
Dr. Winn: I want to add that cancer existed before COVID, cancer is certainly occurring during COVID, and cancer will be here after COVID. So we have to think about that other seat and give focus back to that. I’m glad that your show gives attention to these things, and I appreciate you.
Host: Absolutely. Well, thank you so much for everything you do and for taking the time to tell us about it today.
And thank you for listening to Healthy with VCU Health. To learn more about VCU Massey Cancer Center, visit masseycancercenter.org or call (804) 828-0450. I’m your host, Caitlin Whyte. We’ll see you next time.
Caitlin Whyte (Host): The last half-century has seen a wide range of cutting-edge advancements in cancer prevention, screening, diagnosis, treatment and survivorship. The nation’s cancer centers – the 71 elite medical institutions designated by the National Cancer Institute for demonstrating excellence in addressing the nation’s cancer burden through research – have led the way in advancing scientific discoveries into new standards of care.
But access to these cancer breakthroughs has not been equal among all Americans. In this episode, Dr. Robert Winn, director of VCU Massey Cancer Center discusses what exciting developments are on the horizon for cancer research and care in the 21st Century. He explains the potential for community-engaged cancer centers to reduce cancer disparities and ultimately make a bigger impact on the communities they serve.
Welcome to Healthy with VCU Health, where experts from VCU health share their knowledge, cutting-edge research and the latest innovations to help you achieve optimal health and wellness. Take control of your health. I’m your host, Caitlin Whyte.
So you joined Massey Cancer Center less than a year ago, Dr. Winn, as its new cancer center director and have been pretty vocal about your vision for a community-engaged cancer center. What does a community-engaged cancer center entail?
Robert Winn, M.D.: Thank you for that question. That really is the foundation of not only my vision but the foundation of what I’ve been trying to do throughout my entire academic and medical career.
I'll unpack what I mean. We have talked for a long time about the bench to bedside model. What that means is our scientists find a cure in their wet laboratories or find some miracle molecule, and then that cure and molecule get to the patient bedside.
The problem with that model is if you cannot get to the bedside then you don’t benefit from that advancement. And that is probably one of the contributing factors to the disparities that we have seen, not just now, but the ongoing disparities we’ve seen for many decades.
A second part is that there is power in having the community involved in helping you to refine your scientific questions and clinical trials. For example, we have actually had someone say, “Yeah, if you gave me that kind of drug, it might save my life, but you know, I’m not going to take it because my community doesn’t believe in that or there is no way for me to get transportation to access the medicine.” So the medicine is not useful for that community, although it may be for some. My focus has been on trying to get involvement from the community by thinking of it as a people to pipette model, where we look at what’s happening in our communities and design our research accordingly.
And now, given the big data that we have, we have multiple opportunities for looking at more precise data about communities and then developing more precise interventions to really improve the health of those communities. And that is one of the things that I think in the 21st Century modern-day cancer centers can do better now than they’ve ever been able to do in their past.
Host: Now, tell us more about that community engagement. Why is it so important?
Dr. Winn: Well, first of all, let me explain that community engagement is different than what most people think. I’ll define what it’s not: it’s not outreach. It’s not just simply going into communities and educating them about cancer.
It’s not just putting up posters or having a booth where they come and get information about screening – that’s community outreach. Community engagement is bi-directional. It means we’re engaging a community by not only giving them information, but by having them give us information. And that’s the biggest piece that people miss. Engagement can be the foundation for which our navigators and others are able to facilitate not only information about the importance of clinical trials but facilitating folks getting onto clinical trials.
So I think that when we think about community engagement, we have to understand that there is a science behind it and there is a real benefit to it. You’re engaging the voices of the community, and that really does have an impact.
One example for me at VCU Massey Cancer Center is that we have had our traditional advisory board that raises money for us and we have had a community council, but I’ve now established a director’s council. And that council is made up of people throughout the different parts of our community (catchment area).
That council is meant to give me information about what’s happening in the community right now and for the community to know what’s happening in our cancer center and to try to align what their issues are and what the cancer center is able to deliver on. The goal is to deliver better cancer care throughout the community and our catchment area in Virginia and to reduce the cancer burden.
Host: Now, when we're looking at cancer disparities, what are some factors that contribute to those gaps?
Dr. Winn: Well, the interesting thing is that the factors that exist in 2020 are also the factors that existed in 1980, in 1965, in the ‘50s. The same factors are what W. E. B. Du Bois wrote about in 1899 in the Philadelphia Papers.
These disparities are frequently built on social structures; for example, lack of education, housing issues and economic inequities. And all of the things that we are more aware of now than we probably were even just two years ago, but they were always present.
We frequently think about health disparities, and we almost blame the people living in those underserved communities for their plight. I want to change that narrative and say that we have to look at the structures that set up those disparities.
Host: Now you touched on it a bit in that last answer, but can you tell us more about how this community engagement will help with those health disparities in your community?
Dr. Winn: I’ll give you a concrete example. During the COVID period, we had a heart-wrenching thing happen in Virginia.
The story is that there was a well-known, well-beloved faith-based leader that in early January or February [2020] essentially said, “I’m not going to change the way I do business because, you know, the reality is all you have to have is faith. I don’t believe in the COVID virus.”
Unfortunately, he died and so did several other people from his congregation. The story was covered on CNN and everywhere else across the country. That was a wake-up call. To a number of people it said that this virus is real. But here’s a question: Where were most of the faith-based leaders who were part of what I call “the anchor institution network”?
If you think about anchor institutions like libraries; libraries were closed. Schools were closed. The other important anchor institution is the faith-based community, and we recognized that early. What was happening to many of these ministers and many of these folks throughout the state of Virginia is that they were getting conflicting information. They were getting information that didn’t make any sense. They were getting information early on that said African Americans don’t even get COVID. Where was their reliable information coming from? It wasn’t coming from the television. It wasn’t coming from the news.
This is where engagement matters. In March we established a Facts and Faith Friday in which we meet with African American clergy every Friday for an hour to discuss issues that are evolving, not only with COVID but also with cancer and other health concerns. Lo and behold, what’s happening as a result of that meeting is that we have almost 300 ministers and faith-based leaders that are saying that when the COVID vaccine comes, they’ll get first in line to take it.
Why does that help? Because when you have communities that, rightfully so, distrust the medical community and scientists, who are they going to turn to? They’ll turn to people that they trust. So what we’ve done in this program, which now includes multiple churches, is give reliable information from our experts at VCU and bring consistent expertise and expert information from the Virginia Department of Health.
These ministers have been essentially deputized to carry information, not only back to their congregations, some of which are quite large, but also to the community.
How does it affect cancer? We heard that as a result of this program, people with cancer who had been afraid to come into the hospital and to the clinics because of COVID are now going there to get care. People who hadn’t been getting screened for cancer are now getting their screenings.
Do you know that those people within that faith base are now starting to plan a campaign about screening? That’s engagement, right? Most cancer centers think that when we come up with a great idea we can just give an edict and it will happen.
It’s going to happen, but it will not reach to the East End of Richmond. And in fact, they won’t even trust it. What I’m saying is that engagement matters now more than ever. We need to show up and be consistent with our presence in the community, because that will ultimately give us the biggest benefit.
We’ve also started an exercise campaign that most of the ministers are running. Why? Because as we’re waiting for the COVID vaccine, the data’s coming out that shows that the people who are healthy get through COVID better.
We’re also talking with them about clinical trials. They are now understanding that clinical trials actually do matter and that the reason why we were able to do things during COVID was because we had clinical trials.
That’s only one-half step over a jump to think about what’s happening with cancer. Because we’ve been dealing with them on a weekly basis, they are now so much better prepared to say, “You know what, doc? How do we help you with getting people to better understand that clinical trials are helpful for us in cancer too?”
You couldn’t do that by just sitting in an office and saying, “Well, let’s engage the community.” That’s real engagement.
Host: I guess that leads me into my next question and wrapping up here. I mean, how do you garner that trust and get the community to then engage back with the Massey Cancer Center to help with all this research?
Dr. Winn: Well, with communities, there are two things I know for sure. You can’t do the parachute – you can’t do that drop in and then drop out. Second, you really can’t build your relationship with the community just on a grant. It needs to be bigger than a grant. So I always talk about the arc of engagement and what happens when the grant ends. How do we continue the relationship with the community? Instead of saying, “Hey, I’m going to be with you,” but then the grant runs out in 18 months, and all of a sudden, you’re no longer there. That gives even more distrust in a community. So I think about how we could do it better. We need to think about it just like we think about other strategic plans. How do we strategically be interactive with our communities over an arc of time? Maybe the arc can be over five or 10 or 15 years, but let’s develop a plan about how we are going to get involved with those communities.
And the second thing is to be consistent in our showing up. Because the truth of the matter is that, of all things, that is probably how you garner trust. People may not trust you the first time they see you, but over time, if you show up and you’re consistent, people will trust that you’re authentic in wanting to help, and they will likely wind up actually helping you.
Host: Absolutely. Well, Dr. Winn, thank you so much for this not ironically engaging conversation. Is there anything else you want to add to the conversation that we didn’t touch on today?
Dr. Winn: I want to add that cancer existed before COVID, cancer is certainly occurring during COVID, and cancer will be here after COVID. So we have to think about that other seat and give focus back to that. I’m glad that your show gives attention to these things, and I appreciate you.
Host: Absolutely. Well, thank you so much for everything you do and for taking the time to tell us about it today.
And thank you for listening to Healthy with VCU Health. To learn more about VCU Massey Cancer Center, visit masseycancercenter.org or call (804) 828-0450. I’m your host, Caitlin Whyte. We’ll see you next time.