Richard Silvera is bridging advocacy and research through the Robert A. Winn Diversity in Clinical Trials Award Program

Richard Silvera is working to build trust between doctors Bronx communities  that have a heavy burden of anal cancer. 

“There are higher rates of anal cancer among people with HIV. There are higher rates of anal cancer and poor anal cancer outcomes among Black populations as well,” Silvera, assistant professor of infectious disease at Icahn School of Medicine at Mount Sinai, said to The Cancer Letter. “Both of these communities have a lot of well-earned medical distrust, and that needs to be overcome, and actively overcome, by the people providing care. Or else, no matter how good the technology is, no one’s going to be there to receive it.”

Silvera, a recipient of a grant from the Robert A. Winn Diversity in Clinical Trials Award Program established in 2020 by the Bristol Myers Squibb Foundation, spoke with Winn, director and Lipman Chair in Oncology at VCU Massey, and senior associate dean for cancer innovation and professor of pulmonary disease and critical care medicine at VCU School of Medicine, about his work in the program. 

For the third year, Winn is guest editor of The Cancer Letter during Black History Month. His interview with Silvera is the first of this year’s series documenting the the impact of Black doctors  in the field this February.

A video of their conversation appears here. 

What’s the first step to overcoming the distrust that Silvera speaks of? 

“We need to have more diverse research professionals, not just physicians, but research assistants, aides, nurses, all these people need to be members of the community they’re caring for,” he said. “It gives you a common language to speak with your patients—yes, you can try to connect with people who come from different backgrounds than you do, but having a common experience is really a quick entry into a shared language of that person, a shared experience.” 

With grant funds from the Winn Diversity in Clinical Trials Award Program, Silvera said he hopes to bridge advocacy and research. 

“This program is nurturing my research career to get those first steps taken to be an established independent researcher,” he said. “Advocacy can be built into research questions if you ask the question correctly. I really would like to be a fully-formed, independent researcher, so I can have the ability to form those questions and ask those questions.” 

Diversity in the workforce is key to advocating for patients in underserved communities—like patients with anal cancer who Dr. Silvera is treating in the Bronx. 

“It also lets you bring the concerns of that community into the planning room, into the research protocol development room,” he said. “It lets you consider, what do these people care about? And can we represent those cares when we design this trial, when we recruit for this trial, when we think about how the trial is going to be set up? There are some things that are just really hard to know by reading a paper. 

“You have to really live that life, and we need to have people with those experiences in those rooms when we develop these trials. Diversity of the workforce is also really, really important.” 

Silvera lives in East Harlem, where the Young Lords—a group of revolutionary Afro-Latino activists—were once active.  

“I live across the street from where their headquarters used to be, so I walk by it every day,” he said. “By commitment to their community, and by being innovative and being dedicated to what they were doing, they were able to accomplish so much—but they started with so little.

“And this reminds me, as a junior researcher, I feel like I have no funding. Well, you don’t need money. You just really have to try. Trying is more than half the effort,” he said. “While I may not have a multimillion-dollar research budget, I can accomplish something with what I do have.” 

Robert A. Winn: We’re going to talk today about the Bristol Myers Squibb Foundation Program. To start off, how and why did you get into medicine?

Richard Silvera: My path to medicine was a little bit circuitous. I initially started my academic work as an English major. 

I studied literature with this idea in the back of my head. I wanted to do medicine, but I didn’t have a real plan of how to do that. And then I finished my undergraduate training and didn’t really know what I wanted to do. I actually ended up working in clinical research—and I fell in love with clinical research.

I really wedded my love of stories, and taking individual stories, and finding the essential truth of those stories, and weaving them together into a larger truth that we applied to a whole population.

It let me find a way with that English major mindset to make medicine into a story that could be used to help multiple people. I found my way back to medicine that way, particularly the care of people with HIV. 

That’s how I got back into medicine.

That’s a wonderful path. Now explain more about the HIV-and-cancer link.

RS: I got into the care of people with HIV, because I was really drawn to the complexity of their care. Not just the medical complexity, but the social complexity, the political complexity that all patients with that illness had that surrounding their care.

The complexities really attracted me, because of their interaction with the doctor-patient relationship. And then, as part of that, I always looked at medicine through a primary care lens. I really wanted to take care of people, become a part of their lives, and take care of them over a long period of time.

And as I got into HIV primary care, I learned more and more about the toll of anal cancer among people with HIV. It was affecting people with HIV regardless of the kind of life they were living or regardless of their exposures in the past.

There was a much higher rate of anal cancer in people with HIV. And it was so common that it was something that really needed to be addressed in primary care.

That really made the light go off in my head, because I loved research. I also loved primary care, and this wedded all the things I was interested in medicine. We’re caring for people with HIV, doing so in a primary care setting, and trying to do preventive medicine and keep people living longer.

RS: There have been great innovations in treatments for anal cancers, but I think that ideally what I’m focusing on is prevention. 

An ounce of prevention is really worth a pound of cure. While there’ve been great strides in treatment modalities, having less invasive treatments with better outcomes, I would rather prevent that cancer from happening in the first place if I could. That’s really the goal of my research right now. 

We could have strides in anal cancer screening throughout even my career, because there’s a lot of new innovation happening in that field.

Since I’ve entered into this world of research, we are working to perfect our ways of screening for anal pre-cancers so we can then remove those anal pre-cancers before they become anal cancers. That approach has been validated recently in the ANCHOR trial. It’s a large, multi-site trial, which showed that removing pre-cancers effectively prevented anal cancer from developing.

That’s great, that’s wonderful. That tells us we have a way of preventing these cancers from happening before we have to worry about treatment outcomes. But we have to find those pre-cancers before we can treat them. And that is what my research is looking at, new ways to find those anal pre-cancers.

As you start thinking about how to find them, it actually depends on two areas: the technology and the ability to find them. It also depends on the community and their level of trust to be participants. How are you addressing those issues?

RS: We can have the most amazing technology in the world, but if people don’t trust you enough to come to your clinic to receive that technology, it’s pointless.

Building an infrastructure of research in these communities is going to be a step towards building their trust because it takes generations to build trust, and you can’t just do it in one afternoon.

Particularly in the populations that have a heavier burden of anal cancer, there’s a lot of very justified systemic distrust of the medical establishment. There are higher rates of anal cancer among people with HIV. 

There are higher rates of anal cancer and poor anal cancer outcomes among Black populations as well.

Both of these communities have a lot of well-earned medical distrust, and that needs to be overcome, and actively overcome, by the people providing care. Or else, no matter how good the technology is, no one’s going to be there to receive it. There are many ways we can address this.

First of all—who is doing this research?

We need to have more diverse research professionals, not just physicians, but research assistants, aides, nurses, all these people need to be members of the community they’re caring for.

It gives you a common language to speak with your patients—yes, you can try to connect with people who come from different backgrounds than you do, but having a common experience is  really a quick entry into a shared language of that person, a shared experience. It really is hard to duplicate otherwise.

It also lets you bring the concerns of that community into the planning room, into the research protocol development room. It lets you consider, what do these people care about? And can we represent those cares when we design this trial, when we recruit for this trial, when we think about how the trial is going to be set up? There are some things that are just really hard to know by reading a paper.

You have to really live that life, and we need to have people with those experiences in those rooms when we develop these trials. 

Diversity of the workforce is also really, really important.

RS: So I’ve been fortunate enough to be one of the first recipients of The Robert A. Winn Diversity in Clinical Trials Award Program.

But I’d argue that I am honored, and I am actually benefiting from your getting out there and doing it.

RS: Good on both sides, for everyone. I’m part of the initial cohort, and this program does two really, really important things for the success of these studies.

First, from my perspective as a young investigator trying to learn the ropes of this world, a lot of what we need to know to be a successful researcher—how to develop a research trail, how to inform a research question, how to write a manuscript appropriately—all of those things are not necessarily taught in classrooms.

They’re a shadow curriculum that you have to learn from the people around you. People from diverse backgrounds may not have access to those shadow curriculums and those networks.

I think creating an infrastructure to get that information to people who may or may not have access to it, depending on their environment or their connections, is really important. It gives them entry into the places where they can do really important research.

Secondly, the focus on actual, tangible skills and thinking critically about how to engage diverse communities, how to build clinical trust, how to move clinical trials into non-traditional settings to try to meet patients where they are—not just have that be a line somewhere on a slide that they are just going to breeze over. 

Having it be worthy of discussion and focus is a really important skill to do research on people who are often excluded from research because research structures are not built to cater to them.

Learning how to leverage those resources you might get, as a junior researcher, to engage these communities that so often are overlooked, I think is going to be really important for getting more people involved in research on both sides, both as the patient as well as as the investigator.

RS: If I had the answer to this question, I would already be on a world tour. But I think I have some ideas of how to work towards this. 

The first step is just showing up and being present. And being present, not just when it’s helpful to you, but being present consistently.

In the world of research, where funding may be temporary, that can be really tough to accomplish. I think that’s one thing that the Winn Program is addressing—having it be a continuous stream of researchers from these communities, interested in these communities, being present in these communities. 

We can create a continuous research presence in these communities that will then be a step towards proving that you’re not just there to exploit that community for a particular research question and then taking your pick of the data and leaving.

Instead, you’re there to actually invest in long-term solution building for these communities. Not just being one person’s random research question, but to have it be structured where there’s continued investment, continued presence, multiple research questions. 

Building an infrastructure of research in these communities is going to be a step towards building their trust, because it takes generations to build trust, and you can’t just do it in one afternoon.

Also, having a commitment from institutions to make that investment, I think is going to be really important.

Changing gears just a bit, talking about history during Black History Month. If you could pick an historical figure who continues to inspire you to this day, who would that be and why?

RS: History is tough, because, in many ways, I think the experience of being a minority in America, you get divorced from your own history.

It has a disconnect where it doesn’t really feel like it’s your own. But I would say that—I’ll pick something a little controversial—this is something I learned about more recently. 

The proximity to my experiences is actually really important. I did my residency training in the Bronx, here in New York.

As part of that, we learned a lot about the history of the Bronx and the history of healthcare in New York City. Before doing my training, I had never heard of the Young Lords, who were a group of revolutionary, Afro-Latino activists in East Harlem.

They’re very inspired by the Black Panthers, doing similar revolutionary work. But what they were able to accomplish for their community is really inspiring.

I live across the street from where their headquarters used to be, so I walk by it every day. To think that they really came from nothing. But by commitment to their community, and by being innovative and being dedicated to what they were doing, they were able to accomplish so much—but they started with so little.

And this reminds me, as a junior researcher, I feel like I have no funding. Well, you don’t need money. You just really have to try. Trying is more than half the effort.

I can take inspiration from them. They were able to build so much and have such a lasting impact, but they really started with so little. I’m lucky. While I may not have a multimillion dollar research budget, I can accomplish something with what I do have. And I find I can draw inspiration from that.

You bring up a good point that sometimes when we go back, we don’t really fully recognize the impact of some of the community activators and the community activists.

RS: Having people from those communities, being interested in people within those communities for the good of those communities, was something that happened in the ‘50s and ‘60s that manifests itself differently today. 

RS: Participating in the Winn Awards Program and doing this research is going to let me engage with success in a few different ways.

This program is nurturing my research career to get those first steps taken to be an established independent researcher.

None of this work happens in isolation, but I don’t want to just be one researcher on an island by myself. I want to be part of a community of researchers doing this work.

To be able to do this, to address these research questions, to let me be the one who designs the questions, to let me be the one who asks the questions, and to be the one who decides how those questions will be asked.

Advocacy can be built into research questions if you ask the question correctly. I really would like to be a fully-formed, independent researcher, so I can have the ability to form those questions and ask those questions.

That’s one form of success. And I think that the Winn Awards Program has well-poised me to be able to do that by letting me get my feet off the ground and start moving in the direction to gather data, get some research accomplished, and to show that these issues are worthwhile.

Part of success is also building a legacy. Not just having it be an island, but having an influence on the next generation. One thing that attracted me to the Winn Awards Program was that there was a mentoring aspect of it. 

Being able to work with medical students has created a network where there will be, two or three years from now, a new round of researchers who have already gotten their taste for this. They will then come in to be able to take over these studies, be my junior researcher, and be the fellow I work with on these next steps.

That is also a mark of success to not just be one person doing something, but be the beginning of a community of people doing something. This Winn Awards Program is a step towards doing that.

None of this work happens in isolation, but I don’t want to just be one researcher on an island by myself. I want to be part of a community of researchers doing this work.

There has already been some great collaboration with other people I’ve met in this program and the network that we’ve been able to develop.

It’s wonderful just being part of a community of researchers who care about these issues, focus on these issues, and make these issues a fundamental part of the research questions that we ask.

I love that. Really, it’s a fantastic response. The Robert A. Winn Diversity in Clinical Trials Award Program is unique in that it’s pioneering, bringing together the design implementation and bringing in awareness of the community. How does it feel to be part of a program in which you’re pioneering, or trying to blaze new paths?

RS: It really feels like coming home in many ways. That first day when we met all the other members—other people who were part of the program, other people who really were passionate about the same things that you were passionate about and cared about, and were upset or energized about the same things that they’d seen in the news or read. Like you’d found your people.

And so, while this is pioneering, it also felt really comfortable and felt right. It’s been surprisingly easy to be able to do this. 

It’s been great to find those other researchers out there working in the same world with an interest in advocacy and equity. It has felt really comforting and great. It’s been really easy to be a pioneer in that regard.

RS: The biggest advice I would have is to bring your whole self to your research.

Don’t feel like you have to cut yourself away, or cut parts of your personality, or parts of your history, or parts of your interests that you think are not what a researcher is supposed to be, or what a researcher’s supposed to look like, or kinds of questions a researcher’s supposed to care about. 

Don’t try to edit those out of yourself when you present yourself professionally.

I would encourage you to bring your whole self, bring all of your experiences, bring your whole history, bring all the things you’ve experienced, both positive and negative, the questions that you ask, to the applications that you present.

We may have been subconsciously told that those things aren’t valuable, but they are valuable in certain places. They’re valuable here. 

And I think that this is a place where I would encourage you to bring your whole experience and your whole self and the questions you ask. They want all of you, not just the paper writing part of you.

They want everything. I would encourage you to just bring your whole self to the application.

RS: Just a happy Black History Month to everyone, and I hope that we can continue moving upward and forward. Other than that, just keep plugging away every day. No matter how dark things look, things are getting better slowly. Keep working at it.

RS: Thank you, Dr. Winn. I appreciate you, as well.