Representation in Clinical Trials

Better, smarter, faster. The future of connected healthcare relies on a powerful digital ecosystem and robust neural network to drive better diagnostics, intelligent operations, and seamless care anywhere. Join us as we talk to the experts about transformational roadmaps for this evolving landscape. What's working, what's needed, and how we get there together. Welcome to health care on air, presented by Verizon. Hey, everyone, and welcome back to health care on air by Verizon. I'm your host, Robin Gold Smith, and we are here at Vyde twenty twenty four in Los Angeles, California. And I've got a great panel today. Joining me today is my colleague Ned Cheney, doctor Arash Naim, and doctor Madel Briggs, both from UCLA Health. Thank you all so much for being here first and foremost. So why don't we start with just around the horn of a quick introduction of your role and what you're doing at Verizon and then UCLA Health. Start there. Sure. Thanks for having us, and, thanks for coming here. I'm Nate Cheney. I'm a global lead for digital health strategy and health equity. And at Verizon, we are looking at not just connecting calls, but we are connecting people. And how do we engage with communities to bring health equity and narrow the digital health equity gap in a lot of communities, underserved communities. And, looking forward to the opportunity to work with UCLA Health and some of the work that you're doing in, with our common vision and strategy that we have to reach out to those underserved communities. Doctor Burts? So first of all, thank you so much for having us. Our pleasure. I'm really excited to take part in this podcast. So again, my name is Madel Braetz. I'm the chief for health equity diversity illusion at UCLA Health as well as an associate professor of emergency medicine. And in my role, what I'm actually responsible for is overseeing all of the health equity and justice initiatives throughout our organization with a specific focus on our workforce, our patients, and our community. And why, of course, we're all here together is because I also kinda centered myself in that intersectionality between health technology and how we can use various different forms of technology to advance health justice, knowing that there are a lot of different gaps similar to what you just mentioned that. And and how do we ensure that our technologies are built in a highly inclusive way? Yep. And then also making sure that they are highly accessible or going to drive us to the outcomes that we all need to have. So again, pleasure to be here. Look forward to our discuss. Wonderful. Thank you. And I'm Arash Naim. I, the chief medical officer for clinical research at UCLA. I'm a oncologist and geriatrician and my interest here is trying to make sure that we can get a very representative set of individuals to participate in clinical research and clinical trials. Doing so helps make sure that the results that we get from those trials are more generalizable to the community. And oftentimes, both older patients, but also individuals that are underrepresented in the community, aren't able to participate. And one of the barriers is sometimes the digital divide in terms of having the infrastructure required to be able to participate. And in one of the hats that I wear is, I'm, one of the co directors of the Hong Kong Translational Science Institute, and our goal is to invest in infrastructure and support our researchers to be able to include those populations of patients that are most interesting. And so working with MED EL and also with Ned, you know, to try to figure out how can we design programs that allow those individuals to be more active and participate if they decide to do so. Wonderful. Why don't we start with you, doctor Birx? I've spent a lot of time like Ned on health equity, and I I wanted to get your perspective on it seems like every health system executive I speak to health equity, access, getting, you know, the underserved communities covered, connected to health care is more important than ever. And I see more and more roles of chief health equity, diversity, and inclusion officers popping up all across the country, which is wonderful. What do you think has been the main reason that this has accelerated and and is in the spotlight now more than ever? So I think that's a great question. And there's some of us that have been doing this work literally for decades, and I am definitely one of them. And so my career started with a focus on specifically quality, because if you look at even what the Institute of Medicine now, a national academy of medicine now said back in two thousand and one, it was defined that if you're going to actually have high quality care, it has to have six certain principles. It have to be patient centered, timely, safe, effective, as well as one of the main ones they missed was equitable. And that was defined more than twenty years ago. But yes, we're just now starting to think about equity. And I think it's twofold of now why all of a sudden we're seeing this real kind of focus on health equity. And I also, and especially at UCLA, we like to push that to the next level, which is health justice. And we could talk about that in a moment. One, the reason why is, of course, the pandemic showed us all of the significant, both racial, ethnic, and social economic inequities that existed. And that was a time in which we were all directly being impacted by the COVID nineteen virus. And so people saw that in front of their face on their television screens that certain populations were dying at much higher rates, but they're the same populations that have been dying at much higher rates from multiple medical conditions. And then I also feel that that the pandemic, in addition to the social justice movement, was also that other additional push of saying we are all connected. And if one of us is gonna be healthy and if one of us is going to thrive, we also ought to make sure that other groups are doing that as well. But you know, even right now, the window of opportunity was very wide open, but now it's starting to close. And one of the most important things for those of us around the table and those of us that are watching and listening to this is really making sure that equity and justice has to be a centric principle of healthcare, just like quality and patient safety. And of course, all of our scholarly pursuits, it cannot go anywhere. And the moment it does, then we're going to actually start seeing where we were before, and that's what we're all trying to prevent. Doctor Narayan, from your perspective, you know, being a a, you know, head of research and clinical research, what do you think of health equity in your line of work? What are the changes you you've seen that are most prevalent coming out of the pandemic? Sure. Well, you know, obviously, you know, the biggest challenge in being to effectively do research is, you know, you need to gain the trust of the population that you're trying to serve. And, you know, clinical research is one of those areas that if you look over the last hundred years had episodes where human subjects may not have been protected in the past in the same way that they're protected today. And so part of what we have to overcome is some historical mistrust associated with the way that we conducted researching. One of the bedrock principle was in doing research is equity, right? You're supposed to do research in an equitable sort of way, but historically getting, a representative group of people to participate in research has been a challenge. More recently though, I think it's there's there have been a lot of initiatives to try to move us in the right direction. The FDA has, for example, new requirements to ensure that you're keeping track and reporting on a broad spectrum of the population. As Madel mentioned, the pandemic taught us that a lot of research can be done through telehealth or in decentralized way. And the more we move in directions and decentralization in terms of clinical trials, the more technological infrastructure needs to be available in the community, in people's homes. And, you know, we don't necessarily think about residential infrastructure for doing clinical research, but it's a big challenge to try to rely on that not only in terms of doing clinical research, but ultimately if we're gonna move care out in that sort of direction. And the National Academies of Science and Engineering and Medicine have developed a variety of principles in terms of trying to get us to think about how we can get a better representative group of patients onto clinical trials. And it's really the entire spectrum of really engaging the community as partners in designing the research, engaging the community in terms of determining what you're studying, how you're evaluating it, but also taking into account that participating in clinical research takes time and resources. And that has an economic impact in terms of the many of the subjects that we serve. So programs where we can help them overcome some sort of a barrier or infrastructure gap that people have in a way that's not economically, you know, challenging for the population of patients that we have, an interest in is super important if we ultimately wanna be able to make sure that those people are participating, generating results that apply to their own community and their own backgrounds. I mean, question for you both. You know, with the rise of digital health technologies, which we've seen just, you know, up to the right coming out of so for COVID and coming out of COVID for sure. But when I think about clinical trials, I mean, traditionally, having to drive, go to a site, now you think about this decentralized clinical trials in the home, the access you now have through technology, connectivity, and devices. How how has that changed kind of your now the way you design these clinical trials? And is it getting uptake? Or, you know, I know there's a a question of trust, but I'm sure people, as opposed to going to a a remote site, having this technology in their home, is that making it easier for folks to Well, obviously, and I'm sure Medell can speak to this transportation and distance is always an issue. And, you know, many of the people that might be clinical trial that we may offer at UCLA may live quite a bit of a distance, adding traffic and delays, etcetera. Especially you lost any Yeah. It's a it's a it's indefinitely a challenge. Miles can take them out. You know, so of course there's the convenience of not having to come to, you know, the the academic medical center. But when you're starting to do things in people's home, you have to account for their views on privacy. You know, everyone has some concerns about technology and, you know, the invasiveness of that. And, you know, we talk about clinical trials in the old fashioned sense of a drug or device, but more and more as we move towards precision health Yeah. People are interested in genomics, which is kind of invasive and people are worried about the privacy associated with that, but also wearables that track the amount of activity that they do and and, you know, get get bio sort of data from individuals over the course of the day that also add richness to the data that we're collecting in clinical trials and research, but also add to a level, you know, type of data that people have to become comfortable with, sharing and trusting, you know, with the researchers to be able to to use and analyze. Absolutely. Doctor Graves? Yeah. And so I first wanna go back to the topic of trust. Yeah. This country in particular has a long history of medical racism racism with inappropriate experimentation on many different patient populations. But oftentimes, there's a discussion that a lot of the lack of trust today is rooted in those experimentation. It's actually not always at case. One help is is that we have moderate issues right now. That's not even linking back to some of the other historic medical experimentation, because of course, in the 1970s, we made sure it was illegal to do inappropriate experimentations, especially on vulnerable populations. But what it really is is looking at how people are treated right now. When they go in to see their physicians, how are they treated? Do they feel a sense of of respect? Do they feel a sense of a better patient experience? And then when it comes to our clinical trials, well, what is the clinical trial? Exactly that like, what is, what is it going to be? How is it gonna be beneficial to me or to my community? And that's where we also have to continue to work on this. And so it's interesting because when we look at different populations, all of our populations are highly diverse. And every single every race is diverse. Every ethnicity is diverse. Every geography is diverse. All people that have different ability status, everyone's diverse. And so that's where the technology comes into play. And the inclusivity of that technology, especially when we're thinking about clinical trials or the type of data that we're collecting, because we wanna make sure that we assess that individual person and say, what's going to work best for you. And how can we ensure that of all the little tools we have in our toolkit, that we create a tool or give you a tool that's going to be most beneficial for you and also going to attract you to take part in these important research studies, as well as so many of the other clinical care processes that we really need people in order to take part in. So it's, it's a, it's a very complex state that we have to be very intentional about and which I, I appreciate all of us are thinking about this in more ways, because if we really are going to have appropriate representation in clinical trials, if we really are going to have equitable outcomes for everyone, that means looking at each individual person and having the various different tools that's going to meet their needs the best. And so whether that's clinical care or research, it's all the same. Yeah. Picking up on that point. So, I mean, I I I love the kind of equitable access to technology based on every population is diverse. I I love that point. When it comes to health equity, what do you see as the biggest barriers to the work you do, right, You know, historically and now because you've been in this a long time, like you said, it's now just getting more and more national attention. What have been the traditional barriers that you that have been the traditional barriers that you that have been most prevalent? And now today, what do you see as those still remaining obstacles? And and kinda where do we go from here? Yeah. The traditional barriers have been trying to maintain the status quo. And so Arash can definitely talk about and also even from my background, so many of our studies even were initially conducted on predominantly white men, for instance, of Western European descent. And so a lot of our care processes, a lot of our institutions were set up to benefit those that all of this work was centered around and not thinking again about the various different diversity within all of our populations, not only within, let's say, Los Angeles or the nation, but also the world. So that's one of the first things is, well, this is how we've always done it. This was the status quo. That is the number one threat to health equity of not taking a step back and saying, well, guess what? The current models don't work. The current models we know prevent others from actually ensuring that they are living their best lives or taking advantage of all of these various different treatments. So therefore, we have to take a step back and say, well, how do we redesign this? How do we ensure to innovate on this and how do we ensure to center their voices? And so today's world, I would say that one of the primary challenges that we continue to face is really wanting to do the right thing, but not investing enough into doing the right thing. So for instance, this opportunity and what we're talking about right now is a perfect example. We know that there's various different kind of, lack of accessibility to certain type of digital tools, let's say in lower income communities. So how do we ensure that we create, yes, the moral business case, but most importantly, the true business case and the ROI of saying, okay, this patient population deserves this and more. Yeah. So how do we ensure that we are able to for them to access all of these various different digital tools that we know will be able to count them and designed in a way that will be able to help them as well. So that's where we are now. We'll be past the moral case, adding on the business case and often times the political case to ensure equity. Doctor. Naim, when it comes to digital health and the exponential rise we've seen, how does that what are you seeing most prevalent in in kind of your your focus on clinical trials and and research? I mean, I think one of the things that ties very closely to what Medel was just saying is that, you know, if we want to have a, UCLA is doing a clinical trial and we do thousands and we want to have a representative sample of LA County, not all of those individuals seek care at UCLA. And so, oftentimes what we have to figure out or be very cognizant of is that when we, get active participation. We have a lot of non UCLA patients that participate in UCLA clinical trials that the care component of the rest of their health is being delivered in every health system wherever they're getting their care. And so to Medell's point, you know, this idea of trust in terms of where they're getting their care and where the call for trial happening may or may not be one to one in all sort of situations. And like I said, we do thousands of clinical trials. And so as much as we wanna cultivate trust with the community, it's very easy for that trust to be broken because they have a negative experience in terms of wherever they're getting their care, or they even have a negative experience in one study or one element of what we're doing even at our own institution. It takes a lot to build the trust, but it's very easy to break the trust. And, you know, I think part of the innovation piece of what I think you all are interested in and what Medel is interested in and I'm interested in is how can technology provide better care. But you can't even get some of these, communities that have socioeconomic barriers to take advantage of, for example, patient portals or from telehealth visits because they don't have what they need in terms of infrastructure to even access that. So we want to test out innovative strategies. Consequently, we test it out in people that have the right infrastructure. Oftentimes, those people of higher socioeconomic background who are able to participate in those studies prove that it works Yeah. And then not able to deliver it probably to the population of people that might eventually be most beneficial in showing that it works. And, you know, I I agree with Medel that trust is historically, you know, something that people talk about. But oftentimes, the other big barriers, if you don't ask someone to participate and they don't feel like they have an opportunity to participate, they're never gonna participate. Or they're not aware. Yeah. Or they're not aware. And we have to do, I think, a better job of socializing what we're doing with the community, the why, when, reasoning behind why those trials are being designed in partnership with the community and with messaging in partnership with the community if we really wanna get those individuals a part of the trial process. Okay. We're gonna pause the conversation there with doctor Naim and doctor Briggs Mallinson of UCLA Health and pick it up on the next episode. In the meantime, if you wanna access any of our content, and we've got a ton, you can go to Apple Podcast, Spotify, or find us online at health care on air by verizon dot com. Thanks so much, and we'll see you next time.