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HRX Roundtable - The ABCDEs of Techquity: A Discus ...
The ABCDEs of Techquity: A Discussion Among Stakeh ...
The ABCDEs of Techquity: A Discussion Among Stakeholders
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which they called a game thing that we had on the table. And when we were going around and talking to ourselves, telling ourselves that this is what we wanted, that it's how we're going to present ourselves as well, it could have been a little bit of a disaster when a couple of things had happened, just the way the discussion that we're going went forward. So what that's really doing is sort of defining what we wanted to do since then. And then when we came to the final, final project, we were able to come to the conclusion that we had been in for quite a few years, maybe two years, and we had been able to kind of find our place in the world and be able to talk to people, be able to talk about this game, be able to talk about the world, be able to talk about the ideas, be able to talk about the challenges that we were going to face. And so we came up with a concept of a project that was supposed to be a game that we were going to try and make happen. What was the challenge at that stage? Yeah, I would say it was a quite deep year that we're in because I can say that the difficult stage of the project, and I've done some research in that space, I was interested about, you know, does it sort of bring the other game together? Turns out, you know, like I told you, let's see if, you know, can we do something else other than what we've got? What was the challenge that we were going to have to then also dispose into a clinical practice? Yeah, I would use, you know, it's a bit of a mystery, I think. Describing it is also important as we talk about it. But that would be my area of discussion. I am a new talent found in the team, and I didn't think I'd be able to get something like that. And then the post-apocalyptic program, I think it was in 2008, I had an opportunity to do a dissertation for the Canadian Academy of Computers and Neuroscience. We specifically went back to 2001, and we did, we were, we worked in a project in those incubation-sensitive biostats that work with a variety of tiny, tiny machine conferences. And so we found out that we had a program that doesn't talk about machine, but do talk about, and we finally decided to look at what can we do with a, you know, kind of, you know, what does that really mean? So, you know, I think that we had to think about something different in different ways. And, of course, with the pandemic, there were a lot of, you know, I think our, you know, training program, learning training, things like that really took off. So, you know, I would talk about that to some extent. Thanks. Hi, everyone. So I'm a physician and I'm the president at the Academy of Computers and Neuroscience, which is a consulting firm that specializes in healthcare consulting. I also care as a survivor of a cardiac arrest that I've been in the nation for 30 years. So I'm one of the many technological advances in the pandemic. So I kind of want to start with that, too, and provide an interesting perspective. Before the pandemic, I feel like with regard to tech equity, I was probably able to benefit from technology because I was a physician and I was present when a lot of other people may not have known about it or may not have been given that opportunity. So I'm looking forward to sharing that with the group. Another round of questions, I think, one of the things I keep people are trying, mostly been, maybe I represent the innovation ecosystem, mostly have been in wearables. I founded a company called Algorithm, which I continue to patch. I currently run a company called Element Science, which is looking at wearables to equip them there. A patch-based, you can say what I'll speak with it, for temporary period of time. I also have a faculty in a program at Stanford called Cyber BioDesign, which really teaches about how we think about innovation. The next thing I want to start with is important. One of the things is that we've often seen innovation and new technologies don't raise all votes. They go to someone, not others, and thereby create inequity. And so part of the pressure, been very important to me, and also the work I do at Stanford and my company, is to making sure that we realize intentional about trying new and cutting out technology so we're not running out of patience. I also run a program in New York City, a four-hour job in terms of helping think about our bio-design process there. So you'll find that it seems, but it's really starts with, you know, that need and thinking about population so that we don't inadvertently vote and try to do something good by creating more inequality. I'm Robert McCoy, I'm a fellow leader at the American FDA at the external part of the great team. And I think inequity is one of our strategic priorities going through 2025. And we're committed to putting patient-first things on patients. And so we are very excited for this to happen today. And we have a lot of things that we're excited to share. Okay, well, thank you very much, everyone, for the introductions. I think everyone's covered really well the importance of health equity in the, I mean, diversity and development, I think. And I think someone has told us, by I think two or three years, both of you have been teaching for a long time, but I have some others that are watching from the background. If you look for your time, I'll set the table here and just present your work or just send your questions out there in the Q&A, we're happy to incorporate them. So jumping back to health equity, we are technically a highly-evolved company. I think we can share that with you. We're also a diverse design and development team. So I think there's a little bit of both sides of the coin. So I think you'll see a diversity across a number of different situations. And thank you, however, for inviting me to go over and to share some things to make sure that we know something, we can learn something, and this is what's served well. So I don't believe that it would take a company to develop this type of equity. I think it's important that we can reach each other and I think it's something that's important for me to talk about with stakeholders and users about various positions and positions. Maybe we have some, but this is why I think it's helpful for us to talk to someone about this and how to do it. So do we want to, do I kind of, do I want to share a very interesting speech to realize what we're thinking and trying to make real equity and thinking about real and particular? There's a document that will be forthcoming that will include some consideration for a framework on some of the components of equity. And just briefly, let me just mention to keep things simple and to make it easy for all of us to work together, to guide our society together, that A, B, C, D, E is equity. And D for B, for accessibility, adaptability, and mobility. B for building infrastructure. C for collaborating across different stakeholder domain. D for digital literacy. And E for ethical considerations and privacy. And with that, I want to open up the discussion and hear from all of our panelists. If you think of your particular domain, your personal domain, your professional domain, where do you see yourself? Where do you see your role fitting in? And what are some of the key issues related to some of the A, B, C, D, E's of equity that you all have to bring to the table for us as we consider it together? But let's all do it right now. So, let's start with you. Yay. Sure. So, I came to see a lot of officials on May 30th, I mean, and we were hoping that whoever forthcoming finance documents can help address this. I know that in general, we just publish something called the Direct Guidance for Diversity Action Plans. And this is set to help increase low and underrepresented populations in clinical trials being submitted to FDA. And as part of these, we're hoping that facilitators who are designing clinical studies will define their early goals for the studies along with justifying why those goals are appropriate and representative of the patient populations that are found in the study. And then laying out a plan for how we're going to achieve those goals. And I'm personally very excited because I think that's going to help us not only with how we're going to be able to make sure that the patients who need to be in these studies make sure that they're being tested and where their populations are going to be. And I think that is also very important is making sure that the patients understand that there are other health care facilities that may need support in a specific case. And I think that's something that we've been encouraging sponsors to do is to put in their name, line, and their facts in case there was the demographics of who was studied, when the testing took place, and what those results mean for each type of patient. And I think that's also very helpful as you're trying to take away if patients don't understand what's going on. So, I'll build on that and make two comments. So, I think just on both sides of the company, the best way to kind of change the equation for patients in this country and around it is to really start with people who care about changing the equation. So, the first thing is building organizations that have really different types of thinking in the company. When you think about the New England companies, they're primarily men, black, brown, gay, and all white. But, too, we spend a lot of time trying to find the best stuff everywhere. So, I can tell you in my company, now we have about 120 people. We're 65% black, white, and almost 50% women across the board, even on the internet. And that's not because we're looking for diversity. We're actually looking for people who really feel as if they've come up through different challenges in their life. They've got their story. We do that. So, obviously, that's important. So, it's important because then when you actually think about the more general cases, that's what happens. You actually have a sort of diverse population of everybody standing under this table. That's just part of how it works. It's really, really critical. And I know that I have that comment in terms of FDA's goals. So, we don't have 12 tribal governments in our system. We don't have that yet. But we will have a tribal in the east side up, in the west side up, in the north, in the Midwest. And if you're coming in that way, then you'll have patients that don't get technology. The company will still come in highly. That's helpful. We're only trying to have a third of our patients are women and a quarter black. And not because we try to hit those numbers. It's because we want the communities to know that we kind of represent people who actually end up having a watch in those cities. We're not going to leave. So, when you're really, really thinking about changing the equation of equity, particularly with new technologies, that's a commitment. And you've seen it disallowed across a group of people to not really want to do this. It's not like we just have to meet some checklist and we say, excuse me, I have to meet, and we go to some of our patients and they meet. That's where we see a lot of challenges of what inequity keeps growing. Because the commitment to not be in those communities so long as they have a first patient will work and solve a lot of our inequalities. Not because that was the goal, but because you would never tell it, but the fact that we're bringing this technology to these patients, and they're our patients. So, one of the things I was going to say is, I'm a chair of the UCSF in the Mission District, primarily Spanish speaking. So, I'm one of the co-hosts, the main co-hosts on the panel as well. They also make recommendations, they make assumptions, they know what those patients are, or will do, or won't do. And so, I do think it's not just about the AAPCD, it still comes from why is this important for our country? And it's just about, but in many cases, it's not just, but you know, just to run an example of how we built these pathways to the training of the school of education, how we built the education of the institute, how we built peer practice, but in many cases, do you think it's us, do you think it's the board, or is it, you know, it's not just board? No, it's not just board. But, don't get me wrong, it's the board. Because I think people think, you know, there's only been this thought that you can't do diversity without the patients out there, and without the patients out there. They're definitely out there, they're definitely here. But you have to, the history of how you're positioned in the training is different depending on who you are. So, it takes a different kind of focus than what we do in clinical health. It's building trust. There's a lot of other things that have to be taken into account. So, there's the following historical pieces of this upcoming, that I'm not quoting, but that if you'll consider, hey, we just go back in the same cycle. So, I'm not trying to give you examples. You can do this, you know what I'm saying? So, you know, you have a great group of people to, you know, I'm telling you, I'm not saying we built colonies, but more importantly, it actually changed the equation of where we, you know, the way that I think people think is authentic. So, I'm not saying it can't be done, but it really just doesn't. It's not actually how you feel about this, and why is it important. There's plenty of good business, big as a community, communities that don't get these things. I don't know if it's actually close enough. You know, it's just a lot more because we get too many taxes done. So, if you just think about it even from a, just a commercial point of view, it's good business, but the point that you get into it now, so, in this area of public society, political, separate, you know, we all have these things. I'm not in the blues, but all the things that are true, it's great in this area, and we all have our time, and we get, we see how we deal with these issues. So, there's a lot of benefits. Well, I think that's a good start for me. I don't know, because I think, for me, I think a way to look to university today has been put into a political way. So, we're learning a lot of diversities across everything, you know. It's geographic, it's everything else. So, I think, because they're put in a political way, context, there are people who feel essential, and you're seeing that in our country. And when you roll it back, diversity, I think, which is something I mean, I'm at the age where I feel like this is the affirmative action of the, you know, the 21st century. And you don't totally misunderstand. So, first of all, you have to get someone who understands that this is not about targeting, but really trying to figure out how can we make the best technology for the best and the most people to benefit. And that would not be focused on one particular area, race, or geography in our country. The other thing that you have to realize is that we have, the minority communities who are not being beneficiaries of the technology were actually used for the research. So, there is an underlying kind of mistrust. So, when you go to a community and call them and say, hey, we've got this great technology, but we need some folks, and they know the way out that's escaping, you know, if the exporter knows that years ago we had stage four syphilis, that they wouldn't answer the question without telling us that we had syphilis. So, you've got to also, you know, feel the misconceptions and the past inequities that have been done in the past. So, all of this has to be taken into consideration and communicated. It looks like we've seen stakeholders go to these communities and say, we understand what's been happening historically, but we're trying to work that out and show the value and the benefit because a lot of those communities are the ones that have the worst rates of heart disease than some of the things that we're trying to solve for. So, it's just a very complex social communication. And I appreciate what you're doing. You start with the leader. You start with vision, and you start by building a company that's reflecting that, and then you start by doing products, and then now, when people look on the inside, they go, okay, I can't. But now, if you start with a single-minded focus, and then you go to the community, and they don't see you, then we'll talk through it, and then we'll just listen to your voice. So, in my sense, I think at some point, it's going to be a point of the people, community channels, and then we need that protection, that body protection across the board. And if you think about some of the other people who've said this, they may not be as comfortable with the technology, with smartphones, with mobile phones, with the internet, with your computers to experience what it might look like when you go outside and see what it looks like. So, it's a good time. It can always change your life. It can change you to a greater extent, the process of the work. I specifically make a comic book animation when I'm a little bit younger. I also do a lot of animation technology programming. And I want to be able to say, it's just a big change. And there are no rules. There are no rules. And that's in whatever you're trying to do. Most of the time, people say, that's not a good thing. Well, you do it right, and then you try to find the right thing to get across. And that's something that you can do. I do a lot of animation, but I'm specific in how it's done for me. And I do comic book animation for me. The other thing that's kind of interesting is to, because I'm mostly a cartoon character, so I feel like a lot of people are going through a lot of effort to make animations, including technology, but when they're done, they run really fast, and they're able to do it again. for a child or a parent, you know, that they can, you know, be created. But the key thing to think about is, how can we facilitate these workings that are out there, and then the people that are going to use this? I'm not going to talk about, don't talk about top points. Maybe as a clinician, I won't turn this kind of continuation off, but I don't know what you just said. So I'm going to focus on accessibility, affordability, you know, part of the ABCDs, and then I'll talk a little bit about ethical considerations for that. So as a clinician, I'm in a clinic where you're seeing all these patients come in, you know, some have smartwatches, some don't, and the first thing that comes to my mind is like, you know, hey, this is a person who came for it, this is a person who may not be right. And the next thing is, okay, so imagine how many people out there who, you know, are missing one diagnosis of AFib or other, you know, hypertension, whatever it is, because they just don't have access to these tools. So when these tools were developed, everyone was like, okay, these are not democratic consumer tools, right? You know, you've got to have enough money to buy them. And they got addicted towards these tools, potentially to a threat, or even a threat about, you know, increasing health disparities. So I think the equation here, or the formality to all three of them is how do we turn this kind of development project, that they're doing, is that if we're not able to do that, that's gonna, you know, change the way we talk about practical people. And the way to do that is to, like, we have to think about reinventing the whole, like, you know, a lot of that kind of models, I think. So for example, you know, I'm gonna say there's a smartwatch, or there's a honeycomb ECG, and, you know, again, it doesn't have a product, I'm not telling you it has some bodies, you know, but in general, in the future, we build systems where we can give it out to patients with cold hangs and so on, okay? I mean, there's a real upfront cost on the technology itself. And, you know, and then we can make money through reimbursement for RPM monitoring or reimbursement for a kind of state of the art device, which can start to be a bit of a bulbous, but I just don't understand why this hasn't transitioned to all these other kind of direct-to-consumer devices. So I think we're going to need to reinvent these models. And if we do it in the right way, there's definitely potential for, you know, improving accessibility and, again, turning this closer to the full community and the communities. And I know some people have done that as well, but how does that drive the co-paying level? And if it was driving a little bit more, you know, use it, and so on. I mean, it doesn't mean you get rid of it, like, kind of long-term, you know, chain and all that stuff. But at least at first step, if we can get through it, I'll just say that if I have patients with diseases, then we can work on that. So that's the first point I want to talk about. I think it's important that we don't talk about it enough. That is the ethical consideration of bias and algorithms. Like, we know it's all direct, right, because we know that the trading data is used by all these different companies, or it's mostly biased data, right? And bias towards a certain residency or a certain sex. So now we're not going to repeat that algorithm. We're trying to generalize it, right? We're trying to make it generalizable to everyone. So, you know, for example, smartwatches and PPG doesn't work as well with, you know, black patients because of skin color, right? But, you know, when you're in clinic and a black patient is wearing a smartwatch, and they're looking at the qualifications, but my watch didn't tell me that I could be fit, doesn't even cross the line that maybe the watch is wrong, right? So these are the important points that clinicians need to be aware of. They're often these companies need to be aware of is that, you know, there were populations where this might not be released, you actually got to review the ECG yourself, you know, you got to look for other ways to identify infant, for example, in this population. But I like this book, and I've built this just several summer years within the training data sets. So for example, I've seen it as well, like, I like that in depth a little bit. So, for example, there's a sort of opt-in lens, some of you guys might be familiar with it, but opt-in had this 12 is 49 health, and they called this AIR, and that was basically assigning patients a kind of a risk score, and it's meant to determine future healthcare needs, right? Now, the problem is they called this health, or the household, or, you know, where the cost of a new outcome being healthcare costs, right? So basically, what happened was, you know, black patients were, you know, they were, you know, less money was spent on black patients than white patients who had seropregnant diseases. So what they wanted was to be able to identify black patients with seropregnant diseases as less risk, as less money spent, right? And with that, with the cost, so they did it, they looked over a million patients, it was low for years, but then some, you know, this is from the published study looking into that, well, I got to look at this, but the monies, and they estimated that, you know, if we fix the number, then we'll double the number of black patients who are identified. And then some of them fixed that, and basically, they fixed that later on with the outcome of the after class actual healthcare outcomes, and then that upper sinkhole by 84%. But see, these are the things that, you know, companies, you know, engineers, and, you know, developers need to really put a lot of effort into thinking about this, as you guys were saying. And that's really important. And that's another company, which I love, it's Canadian. They, they trained, or we started to train them to identify patients with Alzheimer's or other diseases, other neurological diseases. So, they built this study, and it was really, you know, they built some external validation tool, but on the local, within that, within that area of Canada. And what they did is they were doing external validation in the U.S., and then that was working great. At least what they found out was that it's because of the accent. So, they trained a model, and the model was taking off of the accent and using this to provide a certain prediction. It also went to a completely external validation ASF that has different demographics, different accents, and they have run a few of these reports. So, these are some of the things that we really have to develop as clinicians. We're going to use these things in clinical practice. We need to really get deeper, we need to get better at understanding where this, where it comes from. You know, one of the biotech companies, for example, that we worked with said that, you know, a few months ago, saying that their algorithm was missing out on VT. That's a big deal, right? You know, we have to go back and look at all these patients and see, like, how they actually missed the algorithm. So, thank goodness, we'll have a clinical back-to-clinical outcome, but these are things that are happening, and for now, we don't know what they're, what is it. Yeah. Yeah, I just wanted to discuss something with you. I want to talk about, sorry, a couple points. I'm going to be very brief, but in terms of clinical practice, you know, it's going to be stronger in different populations, not just, you know, it's just not going to work in a clinical way. It's not going to work in a clinical way. It's also not going to work in a clinical way. It's also going to be stronger, you know, particularly in each sub-population. There's other sub-populations that are not scary, but really, but that's something that we have to think about. You know, it's going to take a couple of hours, but it's going to be probably a couple of weeks, and then we're going to come back with their medical practice report, and then we're going to look at, you know, what is it that's about it to be able to get a copy of that, what's going on with that, how are we going to address that when it comes to, you know, consumer-related devices that not only just don't go well with the external radiation, but with other examples that they have to watch. We're going to go back to that and we're going to find out subsequently, you know, how much chance can you now get it to make, you know, to impact people's health benefits, because not only is it actually a consumer device, it can be sold, but one way to get insurance copies to them can be from other, you know, sources that other people sell to them. Well, that's a great point, and it's not going to be viable, but it can be sold. And then, I can tell you, it's just a matter of, you know, it's just a matter of finding a way around this. So, it's always just a matter of quantity, because companies just won't typically pay for much, and that might be one of the easiest ways to do it. But sometimes, I think that it's really, you know, it comes to a point where you don't need to do that, or hopefully it's not. I mean, you can't go to the point that they want to sell it, because they'll buy it from you, and then they'll say, I don't want to talk about it anymore, and that's not what they want to do. So, it's just a matter of finding a way around the kind of things that they need to keep going. So, and to trust me, the people that are companies that are going to launch in the U.S. or are developing that, you know, companies like this, I mean, there's no reason that you can't do that. No one's going to do it for you. I mean, it's just a matter of being what you are, what you need to do to do that. The first thing you need to do, though, is to be continuing what you're doing, continuing what you do, as long as you can. And I should say, if you can't do it, it's okay. Don't do it. That's what the insurance companies are looking for. So, if you're going to sell, you know, you're going to go to that IOP, you're going to say, well, listen, you should go to a clinic, because it's, you know, improved. You know, if you can't do it, you can't go to a clinic. All of those things, you know, are also going to be good challenges for doing good things, but still, one of those is being smart. Yeah, I was looking at that. I think one of the most important things, going back to basic epidemiology and one of the challenges of, you know, as an example, I had a bunch coming up, I mean, a lot of them stuck with Google. The people that came up and used it. And the people who used it, by the time they were very, very tall, so just going to make it to more percentages, you know, they're just stuck with that. So, it's actually one of, it's important for any technology tech where you have pretty much a pretty close probability of actually finding something, but then there is a false positive where it keeps going up. And so, it ends up being that these technologies just ends up pushing more, they're actually changing things, changing things. And so, the best, technically, one of the great challenges, and I said to everybody, I'm going to kick this off, I think, to all of these, particularly when you have a very successful population, but when you don't, you have to paradoxically make it harder to solve and predict in what you're changing. So, I mean, there are a couple of things. One, there are periodics. If they just need information as well, that information, who's going to use that, is it actually actionable? Does it change the medical history or the clinical economic perspective for that patient? If all those things don't happen, these companies don't go anywhere, and it's getting very difficult. And then, costs of health care keeps going up and up and up. And it's serious because I think most of the folks in this room don't realize that where people don't think about it, I didn't think about it when I was in just in my clinical training, that these companies were there, that we raised hundreds of millions of dollars to build these products. My company did for about $300 million before we actually get to a public offering or something. So, there is a set of undertakings, and it's amazing how many companies, and this is, we don't think about the pre-test probability, and exactly a subset level population where it's defined in health. Now, if you solve this benefit case, at the end of the day, if you're going to talk to one out of a hundred of them, that's one thing. One out of a thousand, I don't want to know more than that already. And what we always see are such a big numbers, and you're like, I'm going to cut this patient. So, you're going to buy out the $199, you're just using it. And don't need it. So, I think there's a fundamental different discussion of where there was benefit. Which is another thing, which is also why you're thinking outside the box. It's like, well, we're all doing something, and I feel like we're doing many other different things. So, for example, if we're thinking about cardiac reflux, I think it's not just being bad, it's it's not all bad by you, but it is like, my own patient for me, and it's the ones that go back to that period of my life. So, I think there's a lot of different techniques, and if you explore it this way, things can really become real, and a lot easier to do this way. And easier for your patients to compete to implement this, so you can go, well, I'm not sure what I want to do, but I'm just going to go for that one. So, thank you. So, this is a really important point. I think this is a really important point that I think we need to think about. I think we need to think about, what can we do? What can we do? So, this is a really important point that I think we need to think about, what can we do? works that the rest of us have built. And we also had a library consultation. We convened representatives from A.J., N.C.C., the journalists, the Association of Library Artists, and the American Association for Correctional Surgeons, and created a consultation for those that were new. They said it was launched back in February, and we were here next steps around that. We actually, because this is where this paper was written, which I created back in 2007, and we got officially recognized by U.S. Congress in 2008. And so this month, we actually had some A.J. time coming up next Tuesday, and we did have about 48 hours for the consultation, really, to make up. And then, we also collaborated a lot to finally do a 50-50 collaboration with American Heart Association about 10 years ago to create Library of Experience, which is a discussion forum to support and personalize action for the working of patients. And with the goal of helping drive health equity and expense, we also had the goal of being the most trusted organization for taking patients. They trust us to do things for them, and encouraging them to get involved in clinical trials and studies that we feel comfortable with, and to help them steer away from things that are not necessarily as valid. And then, we're very involved with patient-reported outcomes, measures, and helping to choose those for various global coalitions. But as well as the American Heart Association, patient-reported outcomes. I will make a few notes to say, kind of the eagle-eyed part of the story, when we use that term for patients that took out of place, especially when we're using it clinically, it creates this perception among patients that they're being disadvantaged. So it's better to use terms like young seniors and older seniors than it is to use the term elderly. Actually, I didn't feel elderly until I was 73 in November. I still don't feel elderly. So, I don't know what the challenge is based on where you are, but that's one of those things that basically is a health equity issue. When we call people elderly, we're putting them in a certain box. And their perception of how they're being treated is no different when you call them elderly. And finally, no area of detail. I am this. It's been around research studies that go out to prove that people who have type M and lower oral devices are more at risk because of their lower oral devices. The patients that can be increased, you actually wrote an opinion piece around one of those studies. And I really was appreciative of the things you said and the perspectives you brought to that. That maybe there are opportunities for educating patients in understanding that are at risk. The issue that I have with those studies that seek to prove that wearables make people more anxious, and this is a health equity issue as well, have this bias that it's the wearable, not it's the AFib that makes people anxious. And if people are anxious enough or concerned enough about their AFib that they're willing to spend $500, $1,500 to monitor it, that's a whole other question for those who are willing to invest or can afford to invest as they're trying to pair those up as though they're equivalent. We need to educate the patients involved in creating the research, not just its research objectives. Thank you very much for this. It's not the end of the list, but for those reasons, I'm really happy to see what you've done together. I think that's really an excellent example of how we need to incorporate devices into the development of all of these devices. One of the things that I've found incredible is, you know, when you do a stroke model for stroke patients, how do you make sure that this is represented across patient populations? For example, it does sound great that patients are on intricate medical patients or even neurologists need to get some, how do you make sure that this is incorporated, that these patient voices are heard? Well, I mean, I've been very involved in the St. Patrick Heart Association, and I'll say that just every which I was present. So, I don't think it's been communication, education, involved in support groups. I myself have received over 50 shocks in the 30 years that I've had my device. I think I have PTSD from it. I don't know why, but I worked on it, and it took quite a while to get that sweat dripping from my face from fear of getting shocked. So, that's one of the things that my emphasis has been helping folks understand what's available to them, understand the symptoms of surgery, and not having to worry about getting defibrillators than ever, but understanding that and understanding the probability of getting shocked and what that's going to mean to them personally. So, really focusing on communication and trying to be a vehicle for sharing my experience. Yeah, the other thing I would make sure is that we don't leave all patients the same, because some can have the same, whether it be an infant, whether it be post-sudden cardiac death, and because of their own ideals, some really want to know a lot, and some really don't. And so, it's more about respecting what they want, as opposed to forcing them to be a certain way, because a lot of communities have cultural norms where, particularly folks who are maybe more advanced in any of these, their families think about them a certain way, and so there's just a lot of differences. So, I think it's really more about making sure here's the information, and then letting them figure out what's right for them, as opposed to kind of either forcing one way or not. It's actually a variety to make patients really turn off to something if it's forced a certain way. That's not the way they consume information or are comfortable with things, and oftentimes, it's pretty obvious on chronic or not. Coming to terms with that is a different process for different people. So, I think there's a lot to say about patient advocacy, but it's also meaning of where they are and, you know, what we're telling people about and where people go a little bit, in terms of where they end up. So, it's a number one approach. This is a question by one of the folks I'm working with. So, what advice do you have for people who are going to be across all of this, and don't they? Because there are just these things that trust. There are just these things that are going to make me, you know, feel a lot of pressure to do something, because they don't want me to help them. I'm too worried about the answer to the exact same type of patient or other patient. So, I'm thinking about patients truly as an individual across a different patient, different different ways of treating and being a patient. I want to close here, and I don't know how long this is going to take to finish, but I'm sorry if I don't finish with you. I'm going to speak to you tomorrow, but I have a question that I think you should ask. This is a good question. I want to thank you for coming along with me. I also want to thank you for coming, and thank you for being here. Thank you.
Video Summary
This video features a panel discussion focusing on health equity and innovation, particularly in the realm of digital health technologies. It begins with a background on the development of a game-related project and transitions to exploring how new technologies can address health inequities. Several speakers share their experiences and initiatives, emphasizing the need for diverse representation in clinical trials and among technology developers.<br /><br />Key points include the importance of building organizations with diverse thinking, addressing mistrust in minority communities, and ensuring accessibility and affordability of health technologies. The challenges of bias in algorithm training data and the critical need for diverse data sets to improve the accuracy and applicability of health technologies are highlighted.<br /><br />The discussion also covers ethical considerations and patient-centric approaches in health innovation. Practical solutions like rethinking reimbursement models and involving patient voices in development processes are proposed to mitigate health disparities. The panelists stress the significance of communication, education, and patient advocacy to enhance the effectiveness and equity of healthcare technologies. Overall, the video underscores a comprehensive approach to fostering health equity through thoughtful innovation and community engagement.
Keywords
health equity
digital health technologies
diverse representation
algorithm bias
patient advocacy
clinical trials
affordability
community engagement
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