The Importance of Diversity in Health Research

[00:00:03] Speaker A: Welcome to Conversations With All of US, the show that explores the evolving world of health research and the role we can have in creating a healthier future for generations to come. I'm your host, cheryl McLeod, community engagement and communications manager for all of us new England at boston medical center. Today, we're talking about the importance of city in health research. Joining me are Daniel Moretti and Edie Stringfeld. Welcome is important for several reasons. First, where we live, how we live, and our background can all affect our health. Second, many groups of people have been left out of research in the past for example, groups that are diverse in gender identity, sexual orientation and health status, race or ethnicity, geography, and other ways that we think about ourselves. That means we know less about their health. There's power in diversity. By studying data from a diverse group of people, researchers can learn more about what makes people sick or keeps them healthy. What researchers learn could lead to better treatment and disease prevention for all of us. I'm so excited to welcome our guests for this episode daniel Moretti and Edie Stringfellow. Edie stringfellow using she her pronouns is the vice president of Ecosystem Development for the center of Global Health Innovation. Ms. Stringfellow recruits national and international pioneering organizations to expand Atlanta, Georgia's Collaborative BioHealth Ecosystems, a growing and thriving marketplace where the life sciences community works together to balance global and local priorities. She's also a community advisory panel member for the all of US Research Program in New England. Daniel Moretti. Using all pronouns is a community engagement. Lead with pride, Net. Based out of Stanford University. His work focuses on connecting LGBTQIA plus community members with ways to participate in research, such as the Pride Net study and the all of US research Program. He creates opportunities for community input to inform all stages of the research process. Daniel has more than 15 years of experience working at the cross sections of community engagement, social justice research, and nonprofit arts in diverse locations, including San Jose, San Francisco, Los Angeles, Boston, London, and Cebu in the Philippines. So let's dive in. Edie, Daniel, thank you so much for joining us. How are you today? [00:02:51] Speaker B: I'm great. [00:02:52] Speaker C: I'm doing well. Thank you so much for the opportunity to be here. [00:02:55] Speaker A: Well, thank you both for joining me, and I would love to start this discussion with a little bit of history of engaging diverse communities in health research. Why were certain communities left out in the past? Daniel, let's start with you. [00:03:09] Speaker C: Yeah, so, the work that I focus on is around LGBTQIA plus communities and representation in health research. And I think one of the probably best examples I could give where our communities were left out of health research were in the when it came to the AIDS epidemic. And really, there was slow moving or a complete lack of research at all around the disease and how it was disproportionately impacting mostly gay men, but our LGBTQIA plus community overall. So really, that was something that I think intentionally was from our governments and our institutions because they didn't value the lives of LGBTQIA plus people. And so that meant that they didn't make research, this disease that was impacting this community a priority. So it really took input from the community and community activists to make a change and to really push for research that could save lives around AIDS and the epidemic. [00:04:11] Speaker A: Do you have any comments you'd like to add to that? [00:04:13] Speaker B: Well, it's several that you can add. It goes so much further back than just a couple of decades. We're talking about centuries, several factors that affect us and the participation levels that have been identified because of study design, logistical problems, getting there, participation, low levels of health, literacy, social, cultural factors, specific attitudes of investigators and the doctors that have hindered research participation from people from diverse backgrounds. This mistrust did not happen overnight. It's taking place over centuries. There have been countless historic events that we could look at. But if you take a look at from a historical perspective of recent history let's dive in. If we talk about the Tuskegee Cyclist study, and it's widely recognized as a reason for mistrust because of the extent and duration of the deception and mistreatment and the study's impact on the human subjects that were involved. I'm trying to think it was a study maybe about 20 years ago from one of our prestigious universities here in the US. That recruited young black males into a study that hypothesized the genetic etiology of aggressive behavior. That's what they went into thinking in it. And throughout the time of this study, they gave monetary incentives, and it convinced the parents to enroll their sons in a study that included withdrawal from all their medications, even asthma medications, and eating low protein diets and overnight stays without their parents being there. And they withheld water, they did hourly blood draws, and they administered all types of drugs that increased serotonin levels, and they suspected it, that it associated with aggressive behaviors. So we're not talking about Monstrosities centuries ago. We're talking about things that happened maybe 2030 years ago or less. So we've been steadily evolving from that because of incorporating bioethics. [00:06:13] Speaker A: I'm hearing two things as far as why communities had been left out of research. One is, as Daniel shared, the community wasn't even considered. And then two, there was this feeling of mistrust because of abuses. So when did this start to change and why? Daniel, let's start with you. [00:06:32] Speaker C: One thing I want to just touch on real quickly, I really appreciate what Edie brought up is, as we're talking about who was left out and the mistrust, it's not always who was left out, but who was included against their own consent. And like the studies where people were participants in research that was harmful and it was not meant to help that community. And I think that's really an important piece when we talk about the community activism and the question that you're posing. Cheryl that the example that I gave around in the with the AIDS epidemic, that it was really community activists that were on the front line. So coming from people who were part of the LGBTQ community, who formed community advocacy groups like Act Up that both advocated for this research. So went to do protests at the highest level of government, went to the CDC and demanded that this research happen, but actually themselves did research themselves. So Act Up that also was doing their own research around the impacts of AZT and how it was a drug that can help provide treatment when it comes to HIV and AIDS and worked on distributing that research or looking at research that was being done globally. So it really was. And I think this is kind of one example that I think probably spreads to multiple communities, that it really came from the community advocating for research that was done by the community and for the health and well being of the community. I think that that's a really important piece and it's something that I think also it's borrowed from the ethos of the disability rights movement, where disability rights says nothing about us without us, right, that the community that the research is about of has to benefit from the research they need to be a part of the process. And that's really something that we saw from community organizing in the LGBTQI plus community when it came to health research and having our community be included in intentional and in ways that would benefit the community. [00:08:41] Speaker A: Edie for the communities that you spoke about, when did this start to change and why did it change? [00:08:47] Speaker B: I think the tables turned when A, we realized that if you take a look at the sales and the data sets that we have, they're mostly Caucasian males going back to Europe. And when we're talking about taking drugs to market, if you are not looking at the disease prevalence of the people that have it, how are you putting a drug on the market for them? So it's almost as if you need more people from diverse backgrounds to participate in biomedical research. Who benefits from it most? Not just that community, but also it opened up a marketplace for opportunity and economic growth for biomedical research and pharmaceutical companies. So we also had to look at the economic gains and then also look at the socioeconomic gains for people that were the patient population and the people who also financially benefited from opening up those participating in clinical trials from diverse backgrounds. [00:09:41] Speaker A: Question for Daniel research programs, including all of us, often use this term underrepresented in biomedical research, also known as UBR, to assess diversity. Could you explain what this term means and what populations are considered underrepresented in biomedical research? [00:09:58] Speaker C: Yeah. Thanks so much for that question, Cheryl. So, underrepresented in biomedical research, it basically is the communities that we've been talking about, folks that have been underrepresented in health research studies. So that means that we have less understanding of their health experiences, less data that can be used to provide more tailored and focused care. And the way that the all of US research program, they're really looking, again at the full individual and looks at both diversity but also who's considered underrepresented across many identities. So that includes communities of color, people of color, individuals who are living with disabilities when it comes to age, those who are under 18 or 65 and older. And then of course, the communities that I focus on with Pride, Net, LGBTQIA Plus. So also in science, often they refer to the term sexual and gender minorities, but also looking at individuals who are low income, also looking at education, folks that don't have a high school diploma or GED, people who don't have access to care, and also geographically, people who are living in a rural location. So again, kind of the common thread is these are individuals that have been underrepresented in health studies, so we know less about their health and again, having less tailored, less focused services and care that can be provided. [00:11:28] Speaker A: How do you get communities to understand how important it is to be represented in research when there's this history of mistrust? [00:11:36] Speaker B: I like the aspect of improving cultural competencies in medical school training. So we're looking at where the publication bias started and where the physician bias started is what you're learning in the medical school. And then also the cultural competency training of having specific messages for specific communities. And that's having more community navigators and more community health workers participate in communication and then also how technology came involved, having some websites have 40 different languages available for some of their clinical trial studies at some of the hospitals, at some of the clinics. So I honestly think that we're tailoring the messages because not one size fits all. And you're going to where the people are, to their communities, to their churches or to their gathering places, and then also getting to understand of what that community is, what has been their relationship and their perspective of healthcare delivery and medical research and science. So I think we're taking a step back and realizing it's not one size fits all. We have to tailor the message and you have to get the community engaged and involved and you have to go to where they are. [00:12:47] Speaker C: I agree with everything that Edie's saying, and I really appreciate this question, Cheryl, because in terms of the work that I [email protected], we do a lot of community listening sessions where we hear from the community. We ask know, do you think your community would be interested in health research? Why or why not? And what we heard time and time again was especially in even the most underrepresented within the LGBTQIA plus community. What we would hear time and time again is actually health research isn't something that our community is even thinking about. Health research is not something that our community has even been educated about because institutions have not cared enough about us to provide that education. And we actually just recently finished creating an exhibit to hopefully address that lack of education that was being provided. So we created an exhibit that laid out what are some of the foundations, what is health research, why is LGBTQIA plus representation important? And one of the really important things that we did in that exhibit was we named the Mistrust head on, and we really acknowledged that there's been harms and that there continues to be harms, but provided examples of research that is doing things differently. So research like the all of US research program that is fully providing consents to participants, that is really prioritizing data, privacy and security, and also acknowledges the full person. So we provided those examples of why someone should trust health research and also what it means for LGBTQIA plus representation. And how we did that was through quotes from participants themselves, hearing from the community themselves, why they participate. And a lot of it came down to it's a legacy that you can leave for future generations. So for myself, I'm queer. But I'm also Filipino American. I know that both my communities are underrepresented in health research and I participate in the all of US research program and also in other studies like the Pride study that Pridenet also supports. Because I want to make sure that all of the communities that I'm a part of are included so that hopefully for future generations they can have better health care, they can face fewer barriers. And really, it's about leaving that legacy and hopefully making health care better for many generations, including our own. [00:15:16] Speaker A: It seems there's been a huge shift in perception and understanding of the need of engaging with a community and giving bi directional benefit and meeting people where they are. What are researchers doing to get communities to understand and mobilize around being more active in health research? [00:15:36] Speaker C: I could definitely speak in terms of the work that I do at Pridenet and the community partners we work with. So pride net we focus on Catalyzing LGBTQ health research. We're based out of Stanford. And the way that we do that is that we make sure to connect diverse LGBTQIA plus communities with opportunities to participate in research. So, like what Edie said, going to where the community is at, we're going to Pride festivals, we're going to different health fairs, we're going to the local drag story hour to do an engagement, education, awareness, and, if folks are interested, enrollment. But we work with a very large network. Our work would not be possible without our community partner consortium. It's more than 35 organizations across the country that are working in either health or LGBTQIA plus advocacy. But the really amazing thing when you think about the all of US research program is that they, from the beginning of the program, thought about LGBTQIA plus inclusion. It wasn't an add on. It wasn't something that they said after the program launched, let's think about our plan. So we've been a partner from the beginning, and we've helped to inform engagement strategies. But there's a whole consortium of organizations that are working with All Of US thinking about this intersectionally, that are looking at different communities. So communities, people who are living with disabilities, other racial and ethnic minorities, folks living in rural locations. So I think taking a look at sort of the snapshot of some of the partners that are part of the all of US research program really shows who are the organizations on the ground doing this work. And we collaborate with those organizations often because we recognize that identities are layered, that LGBTQ people are found across all demographic groups. They're in rural locations. We're Asian. We're African American. So really, it's also about that collaboration. So work together, going to where the community's at and hopefully doing this in a way that's engaging for folks, in addition to providing education and opportunities for access. [00:17:50] Speaker B: Daniel, thank you for that. And just to piggyback off of that, we work with several grassroots organizations, community based organizations, and faith based organizations. So what I recommend is carving out budget for these organizations. You go to work to take care or anyone is listening to this go to work because they love what they do. They have a passion for improving and extending the quality of life, but they also have a mortgage or rent. They have kids. They have bills. They have every type of thing you have to pay for. Stop looking at community navigators and community health workers as volunteers. Pay them for their work and hire people from those communities, and they will be that much more engaged. And stop looking to take information from them without rewarding them or compensating them in their communities. And also look at you doing a PR campaign for future biomedical innovators and navigators. These kids of the peers that's learned from it are seeing what's going on. We're talking about roles that's going to be involved in biomedical research and science 20 years from now that we don't even know about right now. It's because the next generation is going to come up with these ideas, but they need to see it. So there has to be a constant presence. And the only way to do that is not just partnering with these organizations, but you also have to pay these grassroots organizations as if you would anyone else. When you invest in a community, the community will benefit from that, but you will also benefit from it, too. We have to learn that you can do good and do well at the same time, but stop looking at these grassroots organizations as volunteers. They need to be paid and invested in because they're doing the work that we need for them to do. Because without them, it doesn't matter what drugs we come up with, if it's not getting into patients arms, it's useless. [00:19:40] Speaker C: I am like, providing all the snaps. And I forgot this is in a zoom call because that was mic drop. Edie agree with everything you said, okay? [00:19:51] Speaker A: People who are listening virtually snap with us. If you're listening and you agree, that would be great. I love it. You are so right, and I hope that people out there say Amen. Hallelujah. Edie, you've led work on diversity at a global scale at the center of Global Health Innovation. What are some innovative strategies that could lead to more diverse community participation in health research? [00:20:13] Speaker B: One thing that we do at the center for Global Innovation is making sure that we think globally. When I say globally, we're acting local but making sure it can be scaled global. So we call it globally. And you have to take a look, and you have to determine what type of platform is best to use. Second, you have to take a look at your sample. Who are you working with and also what are you looking to find out? Sometimes we want to jump and say how we're going to solve, but you can't solve first until we know what we're looking to find out first. And one thing that we have to do is make sure that the information that we are getting in, who needs to know about it, and then also who is keeping that information and how do we go about sharing information with the people that participated. So we are very young organization, so being open and honest about that and we're learning as we go. But we're starting out making sure that we're doing what we're supposed to do locally and that's listening to local voices and providing them with the research and tools and connecting them, serving as that nexus and connective tissue with the research community and the community participation voices. Our navigators again, our community health workers, our community leaders, those who are in our faith based organizations, those who are participating in our after school programs, those who are at our PTA meetings. Because at the end of the day, we're probably one, if not the only industry that 100% of the world's population is going to need, and that's healthcare. You have your energy sector. You have a couple of more sectors that everyone else is going to need. But healthcare for most part is one of the sectors that everyone is going to be a consumer in. So you need everyone to participate in it. Wow. [00:22:07] Speaker A: So what insights based upon your work and your experiences do you have for all of us? [00:22:13] Speaker B: One thing I would say is that all the jurisdictions are different and you need people boots in the ground in those different jurisdictions. So something that may work in the Southeast may not work in the Pacific West, the United States. And so you have to look at that the same way. Some things that may work here in the US. May not work in other regions. You have to be very sensitive of what's going on and the different communities that you're looking to work with and also learn their culture and learn how their relationship with the medical healthcare delivery systems are. And then pay attention to what's jurisdictional or what's legal and what can be done. And what can be done before you want to go in and present a different program to them. [00:23:01] Speaker A: It is so important that we get communities to understand that things have changed. Daniel, this question is for you. Diversity is one of the core values of all of US, and we recently announced that we are the largest and most diverse research program in the world. How is all of us working to engage diverse populations? How did we get here? [00:23:24] Speaker C: Yeah, it's really fantastic, and it's really inspiring. And I think the way that we've gotten there is that from the onset, all of US has really thought about diversity. But who are the different individuals who are underrepresented in biomedical research and who are the organizations that are made up of those individuals that those individuals trust? And thinking about that nationally. So we've gotten there from the network of community organizations and partners that are part of the all of US consortium. So, as you know, Pridenet and Stanford working on LGBTQIA plus inclusion. But there's organizations like the American Association on Health and Disability that's doing great work with communities who are living with disabilities, and the National Alliance for Hispanic Health, who is engaging our Hispanic and Latinx communities and so many more. And the really exciting thing is that the data for this program is continuing to evolve. So every day, every time we have more participants, we have a different snapshot of who it is that we're reaching across the country. And right now, the current estimates is that roughly 690,000 have joined the program. And of those individuals, more than 80% have self identified as someone who is underrepresented in biomedical research. So how we kind of discussed before people living with disabilities, LGBTQIA plus people, people on rural locations, ethnic and racial minorities. And of that 80%, it's about 50% that are also racial and ethnic minorities. And additionally, we have the data that currently about 9.7% of those participants identify as LGBTQIA Plus, which is really great because you consider national studies have estimated that about seven to 8% of the US. Population is LGBTQ plus So it's really great to see that representation within all of us. But the thing is that we don't stop there. There's still more individuals who are not yet included. We're still making our way towards that million or more goal. So we're continuing to hold this high bar for both the scale of participants that are part of the program, but really importantly, who are those individuals and how we can make sure that we're really including All Of US, that it really means every sector of the community, and especially those who have been historically and currently underrepresented. [00:26:03] Speaker A: How have researchers been using all of US data so far? [00:26:07] Speaker C: So the really exciting thing is that there's been more than 6400 health studies being conducted by more than 6400 researchers. And I could speak to some of the research that's being done as it relates to the LGBTQIA Plus community is that because of the scale of this database and because of the scale of the program, it means that it's also what we anticipate as one of the largest studies for representation of LGBTQIA Plus people. And a couple of my colleagues at Pridenet and Stanford, they actually just published some research. So DRS. Wyn Tran and Dr. Mitch Lund published research that looked at what is the prevalence of some of the common health conditions for LGBTQIA Plus people in the all of US research program. And this research was published in a really large and very well respected publication, JAMA Network Open. And they found that conditions like anxiety, depression, HIV diagnosis, tobacco use disorder were more commonly reported amongst LGBTQIA Plus participants compared to their non LGBTQIA Plus counterparts. But they also found that some diseases were less commonly reported. So cardiovascular disease, kidney disease, diabetes, hypertension. And the exciting thing about this research is that we really see it as a springboard to hopefully inspire even more research to be conducted with the all of us data that's focused on the LGBTQI plus community. Because there's now this opportunity to look at what might be some of the reasons why some of these conditions are more prevalent, what are some of the barriers or the challenges that the community is facing, but also looking at why are some of these conditions maybe less prevalent? Can it be attributed to community resilience or community strengths? So there's a great opportunity to do a lot more research, and the really exciting thing is that there just continues to be more research being done that's specific for the LGBTQ community amongst many other communities. And all of this is publicly available on the all of US website for research. So the all of us research hub. So if individuals tuning in go to researchallofus.org, you can see all of the publications that have been published so far, but you can also go to the Research Projects Directory. And the Research Projects Directory in real time tells you every single study that is currently in process with all of US data. You can also search it by keywords. So I'm often there searching Filipino, Asian, the communities that I'm a part of, because I want to see how has my data helped to maybe inform some of these studies? But I'm also searching LGBTQIA plus trying to see what's the research that's being out there. Because, really importantly, what the program does and what Pridenet does is we bring that research back to the community. So for that study that I mentioned about the prevalence of conditions in LGBTQI Plus communities, we wrote a community friendly summary of that research. We emailed it out to our network. We put it on social media because we want to make sure that this research is impacting doctors, academia, but also the community that helped make this possible. So it's a really great resource to look at and really see how this research is pushing forward medicine and healthcare. [00:29:42] Speaker A: Thank you so much, daniel on that research website will be on the link to this podcast. Edie, what were your thoughts when you first heard of all of us, and why did you decide to join and then later become a community advisory panel member? [00:29:57] Speaker B: Oh, my God. You talk about a journey that I so love and appreciate. Something that I dedicate my life and work to is because one thing that I saw approach, it wasn't top heavy with top heavy institutions. When I say top heavy, you don't have your top 20 research institutions being part of the Cap, the advisory panel. We all come from different backgrounds. We all are either patient, part of the patient community, part of a caregiver, scientists, doctors, researchers, economic development, we're all different backgrounds and part of contributing to making this more efficient. So from my understanding, from what I've seen, just being on the calls and being a participant in some of the activities and seeing the research that's being going on and taking that information seriously, and it's everyone that's participating in these calls, it just isn't someone sending their assistant or a coordinator or a manager. I've heard the actual scientists who are part of the research on these calls, and I've seen them in action, and I feel as if I've got to know them so they're not just some being behind a curtain. I actually feel as if we are approaching this, moving forward with the goal of having a million people participate in this in a way that's going to be so beneficial and is going to be more efficient and more effective with getting more people involved. [00:31:31] Speaker A: Wow. Thank you so much for that. I'd like to finish this episode with one last question. What do you hope people take away from this conversation today? And Daniel, I'm going to start with you. [00:31:43] Speaker C: Yeah, thanks so much. I love this question. I think for me, it's when we say all of us, we really mean all of us and that this program is for everyone. So whether it's being a participant, learning more about the research, or just gaining more knowledge about the program, I really hope that we've piqued the interest of our listeners and that you know that your health is valued. [00:32:04] Speaker A: Eddie. [00:32:05] Speaker B: Having access to your health is empowering. Just working with the all of US program, you have access. You are empowered, you are in control, you have a voice, and everyone is being asked to participate, not just a select few. No one is being ignored. Everyone is being reached out to, and if you haven't been reached out to and have heard about it, you are welcomed and embraced. You're not being turned away. Everyone's encouraged to participate. The organization is being very transparent about what the research is for. You have people like you, Cheryl, and others who are being held accountable. You're not just some invisible person that's hiding behind walls and lawyers and this and that. I just want everyone to know that you can let your guard down in every aspect. You can let your guard down in regards to biomedical research. If you are a physician, if you are a scientist, please embrace this new way of doing things. If you are a community activist, tap into what is being offered and share that information about All Of US. Even if you have anything negative, talk to us about it. We don't want to hear just yay and pat us on the back. Tell us what your concerns are and how we can better help you and address you. We respect you, and we want you to be a part of this, and we see you as equal partners as everyone else and solving for these medical health crises. [00:33:38] Speaker A: Wow. This has been an amazing conversation, and I hope that people out there listening realize that whether it's the all of US research program or any research program, your representation is important. And I'd like to thank my guests today. Thank you, Daniel Moretti. Thank you, Edie Springfellow. [00:33:55] Speaker C: Thank you so much. [00:33:56] Speaker B: Thank you for having us. [00:33:59] Speaker A: Thank you for listening to conversations with all of us. I'm your host, Cheryl McLeod. And thank you to our guests, Daniel Moretti and Edie Stringfellow. We hope you enjoyed this discussion on the importance of diversity in health research. If you like this episode and you want to help support the podcast, please share it with others, post about it on social media, hit the subscribe button, or leave a rating and a review. That's all for this episode, folks. See you next time. Conversations with all of US is brought to you by the all of US research program in New England. All of us is an initiative from the National Institutes of Health and Mass. 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