Effort aims to recruit more people of color into medical research studies

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be The Informed Patient with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Life-improving and lifesaving medical advances come about because of medical research, which historically has focused on middle-aged white men. That's starting to change.

With me today to talk about a diversity and research initiative at Upstate are Kathy Royal and Dr. Sharon Brangman. Ms. Royal is the community research liaison at Upstate, and Dr. Brangman is chair of Upstate's department of geriatrics and the director of the Upstate Center for Excellence for Alzheimer's Disease.

Welcome to "The Informed Patient," both of you.

Kathy Royal: Thank you.

Sharon Brangman, MD: Thank you.

Host Amber Smith: Dr. Brangman. I know you're working toward changing this, but historically, why has medical research focused on white men?

Sharon Brangman, MD: Well, basically, because researchers are usually white men who know their area of expertise very well and may not consider it in other groups of people. So over the years, we've seen lots of research that has come out that has excluded women, older adults, people of all races. And that makes it very hard when we get medications or devices that haven't been tested in broad populations of people, to know how to apply it to the people we actually take care of.

Host Amber Smith: And so that's why it's important to include people who are Black and Brown in medical research. Otherwise you don't know how this treatment might work in those populations.

Sharon Brangman, MD: The interesting thing is that race is a social construct that was invented by people, to group people into categories for lots of political and other reasons. It's not necessarily a biological designation, but we then take physical characteristics and try to make biological determinations about that. And if we don't have information about how people respond to different treatments, then we don't really have enough information to know what might be helpful or might be harmful.

Host Amber Smith: Now, why do you think people of color may be hesitant to participate in clinical research?

Sharon Brangman, MD: Well, we have a long history of using people for reasons that may not necessarily benefit them, exploiting them or excluding them from treatments that might be helpful. And everybody knows about the Tuskegee experiment, but that's really just one of many, many instances where the medical community has not had the best interests of other people, other races, in mind when they are trying out new drugs or new devices.

And there are many examples of things that we use today that still have a negative impact on African Americans, for example. An example of this is the way we figure out kidney function in our country. We adopted an algorithm that was really done with flawed research on a small group of Black people that then made the false claim that all Black people had bigger muscle mass. So therefore, when we were figuring out their kidney function, we had to do it differently than we would for white people. It didn't include any other race, and it was based on very bad science. As a result, this has led to the delay in the diagnosis of chronic kidney disease in many African Americans and has also put them lower on the list for kidney transplants, because it makes their kidney function look better than it actually is.

And this was all based on bad science. That has started to change. Since about 2017, many hospitals across the country have started to eliminate using this false premise to determine kidney function. So that's just one example, but my expertise is in Alzheimer's disease and in memory problems and a lot of the medications that are under investigation right now for treating Alzheimer's disease have not been tested in large groups of diverse people.

Host Amber Smith: Well, Dr. Brangman, please tell us about your initiative to increase diversity in research.

Sharon Brangman, MD: So we have a grant from the National institute of Aging, with our co-principal investigators at Mount Sinai (health system in New York City) to look at ways of improving the participation of Black and Brown people in clinical research.

And the key part of this is relationship building and trust building. And our important person in this has been Kathy Royal, who is our community research liaison, whose expertise is in outreach, community contacts and communication, and building that trusting relationship.

Host Amber Smith: Let me remind listeners: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with community research liaison Kathy Royal and chief of geriatrics Dr. Sharon Brangman. And we're talking about an initiative to make medical research more diverse and reflective of the population. Ms. Royal, what does your role as the community research liaison involve?

Kathy Royal: My job is to go into the Black and Brown community, my community, to educate them, to motivate them all into research and give them a little history on research. What was then and what is now, and just encourage them to get involved because we're dying slowly by side effects of what's already out there. And we're trying to stop that.

Host Amber Smith: So what are some of the hurdles you routinely encounter? Do you ever get people who just say no, they don't want to do it?

Kathy Royal: I get people who say no, but I still follow them. They may say no Monday. When I'm back on a Tuesday, what's your answer for Tuesday? And if it ain't Tuesday, it's a Wednesday, and if it's a Wednesday, I got 'em! (laughs)

It's life challenges. There's barriers before they even want to talk to me. They want somebody to help them with what they're going through. So it's a "coffee and a cookie," bench approach. You've got to sit down, you've got to build relationships, they've got to be able to trust you. Because I had one say, "Oh, you're coming in now? Just like the ones before."

Host Amber Smith: No, no, no, I'm different. I'm here to help, talk. Let's sit down and talk. And I usually get them, but they'll say yeah today, but then they'll be hesitant tomorrow. And I just got to go back and say, OK, you want to talk again today? It sounds like you invest time to build a relationship with these people.

Kathy Royal: It takes time. You just can't go out on the street. Like in Tuskegee, our men was walking, and they just stopped, grabbed them and put something in their arm. And ain't no more of that today. We're respected. We're going to be heard. We just did a Black Lives movement. Come on, people. We want to be heard, we want to be respected. So we got to get out there and show them who we are, through research.

Host Amber Smith: Dr. Brangman, I wondered how this initiative is being received by your physician and scientist peers. Are they noticing that Ms. Royal is out there recruiting for a variety of research projects?

Sharon Brangman, MD: Well, another piece of what we're doing is, we've created a research accelerator for diversity here at Upstate. And this is comprised of members of the community, everyday people, as well as leaders, part of our community partners, as well as researchers at Upstate. And the goal is to have researchers come and present their research ideas, preferably while they are under development, to this community accelerator so that they can get input about their protocol design and what they want to do. So we're really trying to change that mindset where researchers sit in a little room with each other, come up with a proposal and then go out and try to find people to recruit. We really think that community engagement is an important piece of any research project.

And it's no longer acceptable to just drop in and drop out of a community. When you have a particular question that you want to have answered, you have to have community buy-in and community participation. And that's what our research accelerator is doing, along with the efforts of Kathy as our community research liaison.

Host Amber Smith: Could you see in the future that this community, or people in this community, might bring forward some ideas for some research?

Sharon Brangman, MD: So ideally that would be the goal because we need to be listening to the community. As Kathy was saying, we have to listen before we ask and find out what their priorities are. And what barriers or challenges they have, so we can come up as a researcher with a protocol that would encourage participation because we have buy-in from the beginning. But we have to overcome many, many years and decades, if not centuries, of mistrust, and even current relationships have to be strengthened because we want people to feel confident in coming to Upstate for clinical care, as well as for research. And so one of the things that we're doing is we're listening to what their challenges are and what their roadblocks have been when they've been trying to seek care so that we can respond to that. That helps to build trust and makes people more open to considering participation in research. That helps them and their community.

Host Amber Smith: Well, let me ask you a little bit about the research of drugs to treat Alzheimer's disease, since that's one of your specialty areas. Is there adequate diversity among clinical trial participants now?

Sharon Brangman, MD: No, there absolutely is not. And one of the more recent drugs that got approved had an international trial to evaluate the removal of amyloid plaques in the brain. They had 19 Black people in that study. They had a small group of Asians because they had a group that they looked at in Japan. They had one Pacific Islander and a small handful of Latinos. That is completely unacceptable when Alzheimer's disease has significant impact in African Americans and Latinos, but they are not represented in the clinical trials.

It's also very cynical and unethical, I think, to have so much diversity in your marketing materials to promote the drug, but you actually did not have that kind of diversity in your clinical trials when you were studying the drug. So I think that pharmaceutical companies and other researchers are starting to understand that this is no longer acceptable. And recently the FDA said that all drugs or devices that require FDA approval have to have a diversity recruitment plan, and it has to be submitted early on. So now we have federal support for having diversity in research. We think that our accelerator with the work of our community research liaison is an excellent model to address these issues.

Host Amber Smith: With the Alzheimer's research in particular, age would be a concern, right?

Are you getting people across the age spectrum?

Sharon Brangman, MD: Many of these trials have cutoffs of people who are 80 or maybe 85. And again, the patients that I take care of are often in their 80s. So, how can we do a trial for a medication that is going to primarily be treating older people if we don't include them in the trials either?

But that has been part of the history of medications in this country. They're tried on younger, relatively healthy people.

And then, people who are geriatricians like me, my colleagues across the country, have to figure out if this drug that works well in a 40-year-old is going to work well in an 80-year-old. So we have to really try these drugs on real-world people, because that's who we take care of.

And that doesn't matter if it's your age, your gender or your race. We take care of people across the board. We have to be confident that the medications we're prescribing are appropriate.

Host Amber Smith: Well, Ms. Royal, if a listener is inspired to get involved and wants to join a clinical trial or look into it or participate in research in some way, who should they contact?

Kathy Royal: To learn more about our clinical trials, they can call 315-464-3285. Or they can call me. My cards are in the community. My research cards are in the community. I'm getting calls as well as I'm getting referrals. So we're here to help because we know everybody is different, but "every body" is different. So that's what we're trying to spread, the message.

Host Amber Smith: Well, let's share your email address too, if that's OK. Royal K -- [email protected] ?

Kathy Royal: Yes, ma'am. That's it.

Host Amber Smith: All right. Well, I appreciate both of you making time for this interview.

Kathy Royal: Thank you.

Sharon Brangman, MD: Thank you for having us.

Host Amber Smith: My guests have been Kathy Royal, the community research liaison at Upstate, and Dr. Sharon Brangman, who's the chief of geriatrics at Upstate University Hospital and also the director of the Upstate Center for Excellence for Alzheimer's Disease. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

Find our archive of previous episodes at upstate.edu/informed. This is your host, Amber Smith, thanking you for listening.