Good afternoon. Hello and welcome to today's webinar. I am Risa Wolf, joined alongside here by Dr. Kristen Wanyanwu from Yale. Thank you so much for joining us. We're excited to have you for today's webinar on diabetic retinopathy screening trials and treatment from an equity lens. This is today's agenda. And before we go on to the actual talk, we'll just go through a few brief announcements. So as you'll see, there's a Q&A box as well as a chat box. We're going to be taking questions from our presenter at the end of the event. Please don't wait till the end to put your questions in. You can send them in through the Q&A as well as through the chat box. And we'll be sending announcements through the chat box and questions should go through the Q&A. So we wanted to just share some of the benefits of ADA membership and connecting with other individuals through the American Diabetes Association as well as the interest groups. And we'll be talking about the interest group in a moment. You can join through the Diabetes Pro member forum by logging in. And additionally, there's a lot of resources available for education and learning through the ADA. And that's through the ADA Institute of Learning. And there are more than 70 free continuing education programs, webinars, podcasts, self-assessments and more available through the Institute of Learning. And you can get the link from that through the chat box. I'd like to also thank the iHealth interest group who are joining us today and who coordinated this webinar. And just want to thank a member, thank all the members of the team, especially the leadership and Dr. Nguyen for joining us to give this talk today. So without further ado, I'm going to introduce Kristen, who is a vitreoretinal surgeon at Yale. She's an associate professor of ophthalmology, visual science at Yale School of Medicine. She specializes in health disparities research. And we are really excited to hear from her today. So again, if you have any questions, please enter them into the Q&A box and we'll definitely take them towards the end of the webinar. Awesome. That means it's my turn. Okay, let's do this. Happy Valentine's Day, everybody. I think you have to stop and then I can start. Okay, let's see. No. It says you cannot start screen sharing while the other participant is sharing. Oh, there we go. All right. Awesome. So yay, now I'm going to play it for real. Slideshow, slideshow. Nice. All right, cool. Okay. So super excited to chat about this with you all today. ADA is fantastic. I mean, it's what we think about when we think about diabetes and the work that is important. And what I love about what they're really doing is digging into the equity side of things. So when Risa and the team said, hey, can you do this webinar? We want to talk about all the things. I said, well, the answer is yes, but we have to make sure that we're telling everybody we're just on the iceberg. There are so many layers to this. There's so many levels and pieces. So I just picked up the pieces that I know best. And I thought the pieces that are most interesting, but I'm so excited to chat about what the possibilities are for the future. And I'm excited to share what you all know as well. So again, I am Kristen Wanyuwu. I am an associate professor of ophthalmology and visual science at Yale. And this is how I start my talk. And the reason I start my talk this way is because this is a beautiful picture of New Haven. And people oftentimes don't say nice things about New Haven. So I put pretty pictures up so that people will do that. And by the end, I hope to convince you that there's some awesome, awesome things that are happening right in my backyard that I'm super proud to witness. And I'm super proud to be alongside of that we can do that will help us to move along towards equity. Okay. So here's an agenda. I'm an ophthalmologist. So you'll see pictures are always coming. So we're going to talk about inequity. So for me, I'm a vitro retinal surgeon, and this is a picture of a tractional retinal detachment. And to me, this is a picture of blindness. So we're going to go through that. We're going to go through some basic definitions, basic ideas about why this is one of the diseases that is on the margins and what it looks like to be able to move us forward past that. And then we're going to go local, which is to me, New Haven, I live in New Haven. Now it's an urban, small city. And there's fun things happening that are trying to push towards equity. And we're going to talk about that. And then I have the privilege of being a part of a few national initiatives as well. And we'll talk a little bit about trials and that on a national level. And then we'll just kind of move forward. Hopefully I will not talk too much and give you guys enough chance to be able to have a good conversation as well. Okay. I do multi-method research. So this means that I do qualitative work, quantitative work, implementation science. And this is one of the quotes from one of our participants. We were creating one of our first frameworks with Dr. Fairless, who is now going to be a retina specialist. She's in training in Oklahoma. And we heard this story. I mean, nobody wants to be blind. I watched what my sister went through. When I think of her living in darkness for so long, you know, it's like, I don't want to do that. And for us, it's important to hear that because our system fails a lot of people and a lot of people go blind that we know shouldn't. And so what does it look like for us to be able to center these stories and build systems that allow us to be able to do this well? Inequities. So I start with the inequities because we have to know where we're going. And if we're honest, we haven't seen an equitable system. We haven't seen a system where everybody gets what they need and we're able to have proper healthcare. We just haven't done it. And so when we're dreaming about this, I always think about the next generation in line and what can happen if we, by chance, build systems that will allow people to be able to do that. So quick definitions. If you've heard me talk before, we always start here. The reason I start here is because I want you to know if this is for you. So there's some basic things that we're talking about in terms of equity, and then we're going to push to the innovative edge of that. If you're still in the camp where you're not sure if these are real things, this may not be for you and that's okay. You know, we can have some other talks about other things, but today we're going to be talking about these things that I want us all to be together. So this is a definition from the science of health disparities research textbook from the current head of the NIMHD. And health difference is based on one or more health outcomes that adversely affects defined disadvantaged populations. And the important part of that is that it's defined disadvantaged populations. Every difference you find is not a health disparity and that's really important. But spoiler alert, it's all the things that you're thinking about. It's the isms, it's racism, it's sexism, it's homophobia, it's classism. All of those things create health inequities and that's what we're going to be talking about, particularly today, racial and ethnic disparities. And this is from the first executive summary when the WHO really started defining social determinants of health. And I like this one because it really talks about what the real problem is. Social justice is a matter of life and death. It affects the way people live, their consequent chance of illness, and their risk of premature death. And social determinants of health, this is from that same document, are the unequal distribution of health damaging experiences resulting from the toxic combination of poor social policies, unfair economic arrangements, and bad politics. And when I think about my participants that are going blind from diabetic retinopathy, these are some of the things that are in the way for them, for them to be able to see well and pursue an excellent life and feed their families. So we talk about social determinants a lot. 80% of the health is outside the clinics, right? Outside the clinics, outside the hospital. And to me, I think about the pieces in eyes, which is why you see my tractional retinal detachment image that is over on the right. And health equity. So how we usually start with health equity is health inequity. And I think we do this because we haven't really seen health equity before. We haven't seen it done well. And so health inequity is the presence of avoidable systematic differences in health. And health equity is the achievement of the highest level of health for all people. The American Academy of Ophthalmology had our racial reckoning alongside everyone else. And when we were doing that, there is a beautiful document, Elam et al, that really goes through disparities in eye care. And I recommend that you take some time to be able to look through that if you're an eye person. But I put this together when we were presenting those findings because I really wanted to allow people to see the spectrum. So from an epidemiologic perspective, where are the disparities that we're talking about? And what are we talking about? Race and ethnicity, socio-economics, location, rural, urban, age, sex, and gender as well. And then across the eye diseases. And so we're talking about diabetic retinopathy today. But what's important is that this is prevalent through lots of different eye diseases that are beyond just what we do. This is a slide that I like because it talks about disparities in diabetic retinopathy. If you do diabetes work, you know diabetic retinopathy disparities aren't new. And disparities in diabetes aren't new. We've known since the beginning that there are some people that have these diseases worse than others. And we understand what those drivers are more than we ever could before, right? With COVID-19, we learned that we had to be able to get the data and we knew who gets sick first and we saw it on display. But if you look at these data, these are 2010, 1998, 2003. Those are over 20 years ago where we started to understand that Black, Latina, indigenous persons have higher prevalence of disease, more severe forms of disease, right? Less privileged socio-demographic census tracts have increased diabetic retinopathy. So where you're living and the socio-economics of where you are, the privilege that you have and neighborhoods as well. So where you live portends worse diabetic retinopathy, worse hemoglobin A1Cs as well. Even after you pull together all the things that we're concerned about, income, race, and education. And now we understand this language of intersectionality and how those things all work together. But to me, it's just important to put what we're fighting in context and to be able to talk about it with truth and to be able to move forward when we're asking the hard questions. So this is a beautiful document that you all have seen. Obviously, this is the ADA's review of social determinants of health that I absolutely adore. The legends that are on this document that really helped to kind of put this forward for us as complications experts in diabetes. And so, you know, this was kind of that cornerstone that we said, okay, well, what's happening in diabetic retinopathy afterwards? And so we did some of that work and I put together the next set of slides to be able to contextualize diabetic retinopathy in terms of the disparities as well that we know. So healthcare access and quality, and these are defined by the HHS categories from social determinants of health. So a lack of routine healthcare decreases the likelihood of accessing a preventative health, which is screening for diabetic retinopathy is that. The second bullet I put here because the Affordable Care Act, there's some work that was done by Evan Chen, he's actually in training and UCSF, what a wonderful human, looked at how policy impacts. So we were able to demonstrate that the Affordable Care Act increased dilated exams, but we weren't able to see if that is sustained. And what I like about this is it shows how much policy informs some of the things that we do and how we're getting people the care that they need. Economic stability, that income and employment, and I really love this image because it shows us that with wealth, we have decreasing diabetes. But what it also shows us is that it's disparate between our racial and ethnic groups, that even the affluent in the higher socioeconomic status still have higher rates of diabetes. And that's something that's really important to draw attention to drive home that all of the things that we're talking about when we're talking about equity can't just be explained by money. And it's really important to be able to talk about race, to be able to talk about racism and ethnicity in ways that are really important. And also, not adherence to DR screening is associated with privilege. Late presentation with proliferative diabetic retinopathy is also associated with less economic privilege and people out of work, as you can imagine, are associated with DR. Food security, this one is something that's important that I'm sure endocrinologists and nutritionists really understand that persons that are food insecure suffer from worse glycemic control. And you can see the data, these are 10 years old. Food insecurity is also associated with a lower likelihood of having an eye exam and a higher likelihood of having vision loss that are related to DR as well. And then education, access and quality. So less formal education is associated with diabetic retinopathy and then poor health literacy, meaning how can we read the bottles on our medication? How can we understand how to navigate our healthcare systems? And I always like to put a pause here because if any of you all have ever had to navigate the healthcare system, the healthcare system is complicated. And I have a wonderful privilege life. And so when we think about how to set up our patients for success, particularly when thinking about the marginalized folks, we have to figure out how to create better systems that are easy. And then this is the last one, less privileged sociodemographic census tracts of increased diabetic retinopathy and neighborhoods have been shown to have increased A1Cs. And then this is the moving to opportunity fair housing demonstration where they move families from a poor social census tract to a higher socioeconomic census tract and their hemoglobin A1C lower just by moving them. And so what it helps us to understand is how important environments are, how important the environments that our patients are pursuing their best health are to be able to navigate. Social community context. I always put that this is where HHS thinks of the racism piece. And I just kind of put this in bullets, you know, black, Latine, indigenous, higher prevalence of DR, less likely to be screened, more severe forms of disease, less likely to follow up after screening. There's some new data as well about less likely to initiate treatment for macular edema in diabetic retinopathy as well. And less likely to present earlier when you have complications as well. The next thing I put up here is this National Academy of Medicine conceptual model and the equity of folks among us are likely familiar with this diagram. And the reason I like it is that it really focuses on community. And if you've had a conversation with me before, you will hear me say that I believe that the answers to health equity are in New Haven and not at Yale. So the answers are in communities. They have them. Our communities have been taking care of themselves for many, many years before institutions like mine were good neighbors. And so there is so much lived experience and expertise. And so what does it look like for us to be able to support our communities in getting themselves well? So this is a health equity through transformation systems of health. We've been talking about systems this entire time because no one can fix all of this on their own. And so it begins and surrounds the centers of community engagement, which we do a lot of in our lab, and then strengthen partners and alliances. And how can we build relationships that are long-term, think advisory boards or community organizations. We have a longstanding community organization partnership, academic partnership that we work together to be able to answer hard problems, expanded knowledge, improved health and healthcare programs and policies, and then thriving communities. And what I love about the thriving communities is that it's community capacity. And when you think about that, we think self-determination, community power, and community resiliency, right? How can we get out of the way of our communities and support them to be able to get themselves well? So here's the part where we'll talk about local, and I just love this, because it's local on two levels, right? Here are some humans, and then here are some humans with groceries and good food that we know people need. So this is our program. So the site saving engagement evaluation program in New Haven, and this is just a quick infographic. And the reason I wanted to share it is because we're talking about equity and we're talking about solutions. So what we do is we identify people at highest risk for blindness based on our own data, bioinformatics algorithm, and then we engage them. So these are folks that haven't had an eye examined over a year. We bring them into the clinic, we do a comprehensive eye exam, we take A1C, we do social determinants of health evaluation with them. And then our community partner, Project Access New Haven, keeps up with them quarterly and addresses a lot of the social determinants that we have access to be able to address the adverse social determinants and then keeps up with them to see what else develops with the hope that if we can keep them, that we may be able to keep them from going blind. And so we have the data and we're so proud of that. And we are gonna be presenting those data at Arvo this year with the hopes to be able to scale this work to say, if we find out who we're really concerned about, what are the next things that we can do? And then the next thing I'll do, and this one is exciting because it's equity because we are co-designing a digital health tool for diabetic retinopathy. So we went in a community center in New Haven and did a focus group. Now we're doing some affinity modeling to try to figure out how to build something that will address the needs for our specific community. So we're gonna be testing them with eye tracking glasses and all the fancy things from Dr. Tarika McCall who's at the Chill at Yale lab. And then we're gonna have a minimally viable product and our community members are gonna say if it works or not, which I think is super fun. What I love is I really think that it's really important, like we said, to start in community and asking questions because I always tell people, like if the answers were really at Yale, we would have done it. And I think we just all have to be together to be able to get those answers. So this is a Chill at Yale lab and they just started doing some phenomenal work. We feel honored to be able to partner with them. This is another local intervention that we have. So this is something that is out of the Office of Health Equity Research at Yale. This is a community health equity accelerator and their models of this, all over the country of how to be in community and how to ask those questions. And this one is just ours. Hopefully we'll get a chance to chat and you can share yours. But this is our Funds First community-based health equity accelerator. So basically community identifies the priorities and the guiding coalition, which is led by two of our pillars in New Haven. And they identify what are the metrics? What are we going to be working on? And then Yale does what Yale does, right? Yale is fabulous at building infrastructure and asking questions and doing the hard, heavy lifting of that rigor. And community is great at being in community. And so we're both operating at our apex and then we see if it works. So we figure out what the metrics are, figure out what the launch is, we implement it and then we evaluate it and we have a fail fast or flourish model where if it works, great, we're going to scale it. And if it doesn't work, we're not, we're going to get rid of it to implement, which is really important. And what we love about this model is that, I don't know if you have ever worked with a community organization, but my NIH timeline is much different from the timeline that they're working on. And so what is important about this is that it gives you community organizations the money first. And then they have decided, here's what we're going to work on and here's what's working for us. And I just love that. And it's really something that I'm so proud to be a part of. And this is another thing that's happening that's local. So President Sullivan just sent an email out to all the Yeleys out there. And as a descendant of slaves, this is something that I think is really going to be important in understanding the legacy that's underlying and the racism that is underlying what is and has been a vibrant community of black people for a very, very, very long time. And this is just coming out and there are really important excerpts here about how they blocked the first historically black university. It was supposed to be a New Haven, right? And the first black congregation and how they hired a white person to be able to represent them, to be able to worship together and move forward some of the things that were important. And when we think about context of equity, particularly racial equity, slavery is a huge piece of that. And being able to honor that history and the impact of that history, even to now is something that I think is so admirable. And I'm so proud to be at Yale and to experience this work. And it's actually going on sale on Friday. So I'm super proud of that. And there are gonna be so many wonderful events to be able to do that and support. So let's just talk some national things that are important. Risa said, oh, I wanna talk about trials. And I said, oh boy, do you? So I'm not a trialist, but I'm someone that works in equity. And I know that looming with Fedora from the FDA and what we know about how important it is to diversify these trials, we have to be able to talk about this and not only talk about it, to be able to figure out what are the interventions that are necessary to be able to build proper infrastructure, to be able to do that and diversify our trials. Okay, so this is the clinical trials transformation initiative. And this work is something that has been going on for such a long time. So when I think of Dr. Freda Lewis-Hall and Dr. Barbara Buehrer, and at our own institution, the legend that is Tisha Harris-Johnson and Marcella Nunez-Smith that have been thinking through what does it look like for communities to be able to participate and feel that they can participate in some of the trials and be well, be honored and feel like they're part of something that is great. So here are some organizational level strategies that are coming out of this initiative. And I was privileged to be able to go to a meeting and to be able to start to think through some of these issues. And this is how they conceptualize this. So sustainable support for clinical trial diversity and equitable access and inclusion. And you can see the circle on the outside with the commitment and the resources and the partnership and how important leadership is and the organizational culture. And then when we are engaging with communities, you'll see this when you study community engagement, sufficient and sustained investments. So at Yale, we have the Culture Ambassadors Program, which is a program where community organizations work together with Yale to be able to recruit and diversify clinical trials. And there's lots of models of this, but we know that there have to be proper partnerships to be able to do that because there is a history of institutions like ours not being the best neighbor. And so what does it look like to build those connections, to build that trustworthiness and to be a better neighbor? And data-driven strategy. So how do we know if we're doing well? What are the data behind if we're doing well in our recruitment strategies? And then clinical trials, ecosystems, collaborations, what are the infrastructures that are necessary to be able to support? And then patients and patient group engagement and then bi-directional community partnerships. So it's not only, what is this trial or what is this company getting out of things? It's like, what am I leaving? Are there some pieces that are there that we can be able to share together? So this is something that's important. So this program is a collaboration. It's called the Equitable Breakthroughs in Medicine Development or EQB Med. And there's actually more institutions now, so we're super proud of it. But it's a group that is working to operationalize that. So remember, we've been talking about, theoretically, here are the things that are important. Oh yes, community. Oh yes, all these pieces. But what we need to know is the how. If I'm trying to figure out how to diversify my clinical trials, what are the pieces that I have and what are the pieces that I need to be able to do that well? And this organization is actually starting this and doing this trial. They have sites around the country and are getting this going. And I'm super proud to be able to ask some of the questions and to support some of the implementation science around this work. So the EQB Med strategy is, they have a maturity model that looks at where a site is at connecting with community and being able to deliver a clinical trial. And then there's an infrastructure that they provide. And so what does that infrastructure include? Network, communications, community relationships, ongoing site training, and sustainable support and standardized platforms and metrics. And so what does it look like to build an infrastructure of networks all over the country that will allow us to engage communities that have been previously excluded and also to be able to give better data to companies that are looking to figure out how to treat some of the things that are ailing the world. And this is the last thing that I'll bring up because this is a national conversation that I think is really relevant to healthcare. So the AAMC Center for Health Justice is starting to ask questions about reparations and historic injustices. And because we know the importance of historical context when we're engaging communities, I think this is gonna be really important when we figure out how to get communities well and what we can leave and what are the pieces that will show that we are being good neighbors in fancy places like Yale and that will allow us to be able to help communities get to their best health individually and as a whole. And then what will that mean to our nation when we're able to do that? So this is me. I like to end to just say how challenging this work is and how challenging the pursuit of equity is because no one has ever seen it. And most of it, we weren't even around when it started. But what I love about the opportunity to engage is that there's so many small and large things that we can do to advance our way towards particularly racial and ethnic equity and diabetic retinopathy, but also in diabetes as well. So this is my email and I put my lab on Instagram sometimes mostly to talk about how much I love my team and our lab as well. So I'm hoping to have a great conversation about all the things. Thank you so much. Thank you so much for that very insightful and informative presentation. I think we're all really interested in how we can really promote health equity for all of our patients with diabetes, but also from the ophthalmic perspective. I think I personally have done a lot of work looking at how we can improve screening and mitigate disparities in that. And there's so much more work being done around the country. The one question that we got, and thank you, Blake, Cooper, for this question. And you sort of address this a little bit, but I don't know if you wanna, the question is really how can we really work on helping to increase diversity in access and participation to clinical trials? And I knew you had that great slide about that. I think it's a question that many of us ask because we know that our minority patients are underrepresented in clinical trials and often the results are really not generalizable to them. And we really wanna know how these things work in everybody that we take care of. So if you wanna maybe address that a little bit more, I think it's definitely we're all interested in. Yeah, no, and I'm interested in hearing your thoughts on this and kind of having a conversation about it. I think it's a really hard, it's a really hard topic. And I think it's really difficult because as a black person and as someone who understands that legacy, it is really important to acknowledge the ground floor of people weren't treated well and are not treated well, right? And so those kinds of historical contexts are true and completely valid. And so, and the other side is also true. We would benefit with more diversity in clinical trials, all of us. And we would benefit from being able to understand how the different treatments are used in lots of different populations. I think those things are both true. And so how do we figure out like how to reconcile all that and who is doing a great job and being able to do that? So I have a friend of mine who does a lot of talking about this and has a really large clinical trials practice. His name is Joe Coney, he's pretty famous in all the things Cleveland and all the things ophthalmology cause he's just the man. And so, but when he talks about this, he talks about making sure not to let our own biases to determine who we engage, like just on a one-on-one level, right? Cause we all have biases. So just because you think somebody might not be into it, if they meet the criteria, I think that's important thing to be able to bring it up regardless of what they're going to say, right? Or what you think you're going to say. We've been able to democratize that a little bit using bioinformatics. I know systems and being able to like link and reach out has helped our health system to be able to reach people they wouldn't have necessarily reached just by using informatics and saying, look, here are the criteria. We're going to ask just all the people that meet the criteria. But I think in that one-on-one connection, I think saying that, I also think building the infrastructure to have allied professionals or to be able to have those conversations yourself because you might need another conversation, right? You work at Hopkins, I work at Yale. We're not so far from, you know what, if you don't act right, I'm going to send you over there and they're going to do experiments on you, right? That's not far. Like there are humans that grew up in Baltimore that I know whose family said that to them, right? And they are still alive. And so I think being able to, one, say that out loud, but then two, to be able to have that next set of conversations about addressing what that means and what we're missing. And because we're missing a lot of data. I think the other side of that that I want to bring up is that when we are having new devices and when we're having things, I think our biases allow us also to have a particular picture of what normal is. And so even from before we even get to the trial, like, you know, when we're having our normal controls from when we're trying things, you know, if we look at our OCT pictures, right, those original data, those eyes did not include black eyes. And black people have the highest rate of non-reversible blindness, excuse me, irreversible blindness from glaucoma. But there are no black eyes in that reference set. And so that bias is, you know, that is what we're talking about in terms of pursuing equity and our understanding, right? And so how silly is it that we have this beautiful tool that looks at optic nerves, but we're not able to use it on a population that we know has larger cups. And so those are the things I think that Fedora is trying to address. I think those are the things that we're trying to figure out how to put in the proper parameters to be able to do. And I also think, you know, this is a perfect segue because I want to hear your thoughts about getting the humans out of it, because I think that's something that's also going to help us in equity in terms of like building systems and using some of our, you know, bioinformatics and other things to be able to get the biases out of this kind of thing. Thank you so much for that, you know, really intricate answer. I think you brought up so many different topics. I want to address this idea of like getting the humans out of it, because I think that, you know, I'm a pediatric endocrinologist. So you know, there are, you know, one of the big disparities that we see, not just in terms of glycemic control and outcomes, but also is in the use of diabetes technologies, which, you know, in several studies have now been shown to also reduce the risk for diabetic retinopathy. So it seems, of course, that we should be promoting the technologies for somebody who is, you know, interested or, you know, willing to use them. I mean, of course, the ADA right now has the standards of care suggest that everybody should use a continuous glucose monitor. But we now have these amazing like hybrid closed loop pump systems where you have automated insulin delivery, where you connect a pump and a CGM so the devices talk to each other and adjust the insulin delivery to achieve optimal glycemic control, yet there are disparities in who's using them. And because we know that it can have so much of a downstream effect, it's really important. But what I find interesting is that there are so many of us are really pushing the use of technologies for everybody. There are definitely still people out there who really feel like people have to sort of demonstrate a willingness, as well as an ability to use one to get another technology. And some of my colleagues here at Hopkins, Ness Mathew-Dek is also an ADA member, also very interested in this area. Like one of the things that we're working on, actually, with the Type 1 Diabetes Exchange is creating like a best practice alert that fires if somebody is not using technologies. So it's based on data and not on actual the provider seeing the patient, because I think you're right. Like somebody might say, well, they didn't wear their CGM since last time I saw them, so then they definitely can't have a pump or a hybrid closed loop. But maybe that's not the right answer. And it should be, they're not using it, let's discuss how we can better use it, and then move forward from there. So trying to take that piece out of it and really using data to sort of move forward versus the provider who can come with bias, no matter how much we try to mitigate it. Absolutely. I love that. I had a patient, I have a young patient who I had this conversation with, and he was really concerned that somebody was trying to put a microchip, or like there was something that's going to happen to him. And luckily, I had just been to the ADA, and that beautiful group of Type 1, where they go and do cool stuff. I was watching those videos of them burning off those calories and fun stuff. And I'm like, look, they're all using it. And they are all using it, they are doctors, they are all using this technology, and they are staying well. And I said, let's educate ourselves about what that might mean. And so I think we find ourselves in a very similar conversation. Think vaccine hesitancy, think all of those other areas where we were able to partner with trusted messengers to be able to do that, where they were able to eventually get those rates of vaccination to even out and get those other, you know, I think there's opportunities. Because in communities that have been historically excluded, there are people that have that type of expertise that will be able to move the needle, and will be able to get people well. And engaging, honoring, compensating, you know, those humans that are able to move communities in those ways are really, really, really important. And you know, I love data for all of this. And you're absolutely right, even though like, oh, my God, who wants another alert. But I think figuring out what the appropriate balance is, and having in front of you, here are the things that we're concerned about. And this person meets the criteria, even though when you look at them, maybe you don't think they meet the criteria, or it didn't pop across your head, or you're too busy, or whatever is happening in the clinic. I think that's going to help us to be able to move the needle as well. And I think the other side of that is, which is what EQB Med is trying to do, can we give infrastructure? Right? Maybe there are organizations that would love to be able to have inclusive trials, and they're feeling like, where do I start? How do I do that? And a 20-year relationship, like, I need them to come join my trial tomorrow. So what does it look like to be able to fast track that, and build that, or like leverage someone else's expertise to be able to do something great, and to be able to participate? And I think that those are the things that are really, really important. But yeah, I want to hear about the AI questions, and I'm going to allow you to lead that. AI and home monitoring devices and less visits, which I think is super fun. I think it's a super fun space and place to be in. We have questions. We have comments. So one, on trusted messengers, Blake Cooper wants to just share that he loves that term. So thank you. I'm going to, there are two more questions. So Bill Adams, thank you for your comment, utilizing community health workers, representatives to guide the message to unsure community members. So this is really important. I don't know if you want to address that one first, and then we can get to the next question. Yeah, I mean, this is such an old concept that is just so valuable. And we learned this, I really, I think all of the equity people that we just, the lab that was our collective trauma of COVID, really allowed that to be on display. And I am a student of Marcella Nunez-Smith, and she was in the thick of all of that. And to be able to watch how they navigated the pursuit of equity with data, with having to answer to community members, with figuring out how to honor lived experience, but also to compensate community members to be able to deliver the appropriate health tools. I think that is something that is so important. I know that in the state of Connecticut, we're kind of in that constant policy battle about what is the proper compensation? How do you define it? Our community partners, Project Access, New Haven, and their fearless leader is Giselle, and she's always at the Capitol advocating for that work, because we don't have a proper model to be able to compensate people for that. And we should, because when we're creating new systems, it is so beautiful when you can have one that not only advances equity and health, but can we also give people some resources and money and skills, right? And so I think that parallel is a beautiful, beautiful opportunity. And around the country, they're trying to figure out how to monetize that, how to pay for it, what are the codes for that, that insurance company should be compensating, and then how to be able to do that, because you need to have care extension to be able to do all of these things so well, especially if you want to appropriately center the margins, which is what we need to do if we're going to advance health. So interesting is that I recently learned that our Medicaid here in Maryland actually will give a patient a gift card if they get their eye screening done. Of course, we use AI and we do it in clinics, so all of our kids and patients are getting it done. But I was like, oh, look, they get paid to do our clinical study, and now they can get paid by their insurance company because they actually got their screening done. And of course, it definitely saves time and money from going to the eye doctor, no offense to any ophthalmologists on this, but we are trying to improve screening by doing it at the point of care. And we will refer if there is a need, of course, but I think it's, you know, some of these incentives can really help motivate our patients to get, you know, the sort of screening done and of course, get to the care that they need, you know, should they be identified to have an issue. No, I think it's so important and you know, I'm a retina surgeon, so the more screening the better. I'm tired of seeing, defining diabetes, tractional retinal detachments in 2024. I don't want to see that, you know, the way we are, the health system that we're in that shouldn't be happening where someone doesn't find out they have diabetes until their eye is full of blood, because that means it has been there for years and years and years. So when we talk about, you know, how can we use technology to shore up the infrastructure to be able to do that, to me, it definitely includes a lot of different spaces and places. And I think that's why I kind of positioned myself on the other end in terms of, you know, community engagement. How do I build systems? How do I figure out who I'm really worried about? And then how do I put a proper structure around them? So that yes, I found out you have some things that we need to worry about. And yes, I can keep you, because my hypothesis and that is what we say is that if I keep you, then I can keep you from going blind. But if I lose you, then I'm really concerned that you're going to be one of my young folks that doesn't have the same future that I would love for them to have. And so I think feeling, figuring out where those pieces, how to line up, how to support and shore up social determinants, and then how to be able to get people what they need is a community effort. And I think it has to include artificial intelligence screening, I think it has to include community engagement. I think it has to be able to include all of the pieces, all of the eye care providers, and we have to get on the same page to be able to figure out how we're going to get people what they need, because there's not enough of us in general. So I think it's really, really important. That really leads into one comment to the last question is that, so a comment from Ramassa, thank you so much, Ramassa Channa, University of Wisconsin. She mentioned that other solutions to really trying to diversify clinical trials is having a diversified workforce, so that when patients are approached about trials, it's somebody that's from the same background and that they can relate to. And the other thing she mentioned is also collaborating with industry and Genentech has been doing some really great work to promote equity and diabetic retinopathy. They're doing a lot of work, actually, if anybody went to the ADA equity session at PSI sessions last year, this was a phenomenal session about some of the work that Genentech is doing. Alabama, right? So really phenomenal work. So thank you, Ramassa, for that comment. And of course, again, thank you to Kristen. So last question, is there a way to structure a trial using AI and home monitoring devices with less visits or demand, like for the patient, and still have the metrics to determine primary and secondary outcomes? I guess I could also answer this question too. So I think that the question is, can you use AI? So of course, now with more AI being able to be utilized on mobile devices, I think this is definitely the route that things are going. In the United States, especially with some of these AI trials, we're still using tabletop cameras, some portable, but it's harder to get good images. But I think overseas and very densely populated countries, lower and middle income countries, I mean, India has been putting out tons of algorithms and studies using AI on cellular phones. So I think that is certainly the way in the direction things are going, so that you can be in a remote location. And we know that people who live in rural areas access diabetic ophthalmologists less than people who live in urban communities. So how can you reach all of these people? And as long as that data can then be transcribed or sent over to a central area, you could still assess the primary and secondary outcomes, depending on what you set those to be. If getting the actual screening done is your primary, then of course you can achieve that. But I think the next piece for all of us is always about, if we identify an abnormality, the secondary outcome is how do we always get them to that follow-up? And I think that's more challenging, but I know that Ramassa has done a lot of work around this and shown that it's actually a really critical component of this pathway downstream and that we need to help patients get there. So I think that's probably future work that needs to be done, more than just the point of care, but how do you make sure that the follow-up is also accomplished? Yeah. I think for me, that's everything, because I always tell my trainees, great, you found something, right? But if you're not going to be able to address it, then that is still going to lead that human to blindness, right? So you have to be able to figure out what are those pathways, what is that safety net, what does that look like? Which is why when we talk about our social determinants and understanding what's happening around our participants and around our patients, that is paramount. And I think it's going to be the glove of putting that infrastructure together and putting the humans, right, and that bioinformatics together to be able to figure out how you can make that happen and how can that be as local as possible. And like Ramassa was saying, how can that be community members? That makes sense. And I think also the infrastructure that we're talking about and when we're building, and if you can do something that will allow growth and that will allow resources to flow into particular communities while you're doing that, I think those are the things that you really can make a win for everybody. And I think we should be able to do that, and we think we should be doing that often. But I'm always weary when people are like, oh, look what we found. And then they don't have a plan for what happens when they're finding some of the awful pathology that you find when you start screening folks. So you have to be able to figure out what's going to happen, who's going to pay when we have to figure out how to treat whatever is there, and then what is the infrastructure and what is happening around those humans that's going to help us to be able to keep them and keep them together. And I think all of those things can work together beautifully if we can, once again, design better systems and design systems that will allow us to be able to have the redundancy and to have the appropriate safety net for the people that we're worried about so that people can feed their families and people can communicate and be active participants of the society and the communities that we all love. Wow, thank you so, so much for a really insightful talk and discussion, and thank you for all the comments from the audience. We really appreciate it. We hope everybody enjoyed this, and we'll definitely be having a session at Psy Session, so please come find us. We'll have an interest group meeting as well. We're always looking for more people to join our interest group, so please come find us. That's right. Eyes are where it's at. See? Thank you, everybody. Have a great afternoon. Thank you so much.

Dr. Kristen Wanyuwu

Yale University

health equity

diabetic retinopathy

screening trials

social determinants of health

health disparities

clinical trials

community engagement