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Health Affairs This Week places listeners at the center of health policy’s proverbial water cooler. Join host Jeff Byers, editors from Health Affairs Publishing, and guests as they discuss health policy’s most pressing news and trends.
Hello and welcome to Health Affairs This Week. I'm your host, Jeff Beyers. We are recording on 08/04/2026. A programming note, this month, August 19, we have an insider event with Chris Whaley from Brown University to discuss price transparency, policies, and what people should know about those. It's one of our quick thirty minute events.
Jeff Byers:Check the show notes out and join Insider to join us on August 19 with Chris Whaley today on Health Affairs This Week program to discuss innovation in the health system and the potential for patients to take back power by technology such as AI. We have on the program David Betts, chair of the board and founder for StoryFlight Labs and a former Deloitte employee. David, welcome to the program.
David Betts:Jeff, thank you for having me. It's terrific to be here and reconnect with you. Super excited for today's conversation.
Jeff Byers:Yeah. So David, you and I, I believe, met at some conferences over the years. We would discuss, you know, the in and outs of, like, social determinants in health or, like, other various, you know, buzzy trends around those times, whether it was HIMSS or at the health. So, you know, before we get into our conversation today, what was your favorite HIMSS conference? What year?
Jeff Byers:What city?
David Betts:Favorite HIMSS conference? None of them were my favorites. They were all sort of a necessary evil, Jeff. But, I always enjoyed connecting with colleagues over issues related to health policy, healthcare consumerism, and the like. I think I enjoyed health over HIMSS just because the vibe was a little bit more vibrant.
David Betts:Hymns is always a little overwhelming. I preferred hymns outside of Vegas. We'll go with that.
Jeff Byers:Okay. Yeah. You know what? Not as pragmatic as I thought you might be, but that that's great. Yeah.
Jeff Byers:A little color in there. You know, I like the Vegas ones, but that's, you know, maybe I'm built different. Anyways, so we're going to talk about innovation, ALS, AI, a lot of stuff today. So you were diagnosed with ALS in 2024, if I'm correct. And after that, you stepped away from Deloitte and began some advocacy work beginning with StoryFlight Labs.
Jeff Byers:So I was curious if you could tell us a little bit about your journey into advocacy work and what's been going on.
David Betts:Yeah, Jeff. So I was diagnosed in December 2024, and one of the first things that I noticed was issues with my speech. And and I decided ultimately to do to do three things. One was to travel with my wife, recognizing that that time would be limited. So we've done that.
David Betts:Number two was to dive into advocacy work. You know, there's a lot of need to drive legislative and regulatory change for people living with ALS and I have, you know, the privilege to have a lot of resources and experience in in health policy in particular. So I thought I should put that to work. And then and then number three was, you know, I found that the tools that we make available to people living with speech limiting conditions more broadly, but people living with ALS in particular who lose the ability to speak were lacking in a in a number of different ways. And I and I sat down in January 2025 and thought myself how to code and and built a solution that we call Talk To Me Goose and make it available to people for free through a relationship with the Live Like Lou Foundation.
David Betts:And and that's the third thing that I focus on through the founding of StoryFlight Labs is building a solution that leverages AI to give people back their voice, to give people back agency and autonomy, and enables people to reconnect with their with their loved ones using a voice clone. And, I'm super excited about what we're doing, with the new company.
Jeff Byers:So is Talk To Me Goose a product of StoryFlight Labs?
David Betts:It is. Yes.
Jeff Byers:Okay. Okay. Well, I was just curious. There's, a lot of great work and a lot to take in there. So I wanna just check-in of, like, you know, what is StoryFlight Labs?
David Betts:Yeah. So StoryFlight Labs was founded, actually, and incorporated just this year in April 2026. We actually have two products but the primary mission based product is Talk To Me Goose. As I said, we make it available currently to people living with ALS in North America through our relationship with Live Like Lou. And we continue to to make improvements in the product and it gives people their voice back through an 11 labs based voice clone.
David Betts:And then capabilities that we built into the solution that help people generate text through text prediction and text suggestions. And then a unique storytelling feature that allows people who have children in their lives to generate stories that can be told in their own voice for the children that they that they have in their lives. And and then that feature became the core foundation of our second product called Fables Adventures. That is a revenue generating product that's available on iOS for consumers to download and play with and it helps generate revenue to as I like to say, help fuel my habit of giving things away and that's available on the iOS app store. So so StoryFlight Labs is the is the company that that is a public benefit corporation that helps fuel the mission of of getting people back their voice and enable people to tell their stories.
Jeff Byers:I was I was, I didn't know what about the second product, so was gonna ask you if it was a there was a Top Gun Maverick reference in for its name.
David Betts:There is indeed a Top Gun Maverick reference with respect to to the product. You know, every time Maverick needs a little bit of extra dose of courage, you know, he he utters those words. Talk to me, Goose. It's the very first line of the very first film. And I figured on my journey, Jeff, I'm gonna need an extra dose of courage as well.
David Betts:And I'm gonna need a wingman. And so figured when when I'm on this journey that that name resonated with me as I sat down to build the product and and it just stuck and that's what we call the product ever since.
Jeff Byers:Nice. Well, it sounds like a great product for, you know, especially families. Like, it's you're doing great work with that.
David Betts:Yeah.
Jeff Byers:So I'm excited to talk to about it. And I'm curious, you sat down in 2025 to learn to code. I do wanna were you using AI products to learn to code? Like, how like, what were you doing with that?
David Betts:Yeah. So I've always been technology curious, we'll say. And, you know, years ago, I certainly took computer science courses when I was in college and was just effectively curious about coding. And I knew enough I would say to be dangerous and I knew enough to get started. And I like to say that I had AI agents as a teammate.
David Betts:I didn't, you know, use vibe coding is kind of, you know, gets a a positive and a negative connotation. I did not vibe code this in the true sense of the word. I used AI to help. I would have AI as, you know, effectively initially, I I think I was using a bit as a search engine, helping me solve problems as I was building out the solution and and then I learned that it was way more than a search engine and and became a teammate of mine. And I would, as I was developing features, have it help me solve some of the the thornier problems and and building out Talk To Me Goose.
David Betts:And I try started treating it very much as I would any teammate of mine when I was at Deloitte. Having it actually go out and do research and present me with solutions to the problems that I was having and then and then I would adapt those solutions into the code of the product as I was building it. There's nothing in the solution today that I don't understand how it works and that was part of sort of my approach to working with the AI teammates was if I didn't understand it, I wouldn't put it into the solution. So oftentimes, I would find myself asking the AI copilot or Claude to explain to me how what it was proposing that I do would work. Just like I would ask an analyst.
David Betts:So help me understand how that proposed solution is gonna work here. And I would often find it say, oh, you're right. That's not gonna work and it would come back with a better solution that it would that it could explain. And I found that to be really helpful. So it's not truly vibe coded.
David Betts:It is certainly AI assisted coding. And I think the product is better for it as a result.
Jeff Byers:Yeah. Yeah. I, you know, I don't put positive or negative connotations on the term vibe coding, but, you know, sometimes the vibes are good and sometimes the vibes are off. So it's, you know, it's hard to say. I would imagine that, you know, it can be similar.
Jeff Byers:And just like using AI in general, I think, can be has some positive and negative connotations. And that's kinda what I wanna talk to you about with, like, this thread of innovation that you're going with for StoryFlight Labs. You know, it's putting you know, your story is putting some power of, like, building and creation into the hands of a patient. And so in your view, just like how can patients take advantage of, like, potentially low tech? I don't know how much it costs, but like in theory, maybe it's low cost tech to improve the care management or communications.
Jeff Byers:Like, you know, how do you see your story relating to, you know, someone with with some other chronic disease?
David Betts:Yeah. So let me let me back up and talk a little bit about the solution and the problems that I was trying to solve and then talk about what I saw in the industry. And then, you know, why I think our solution, you know, kind of addresses that. So, you know, once a consultant, always a consultant, I guess, you know, and when I looked at the landscape of solutions that were available, what I what I saw right out of the gate was, you know, first of all, the bulk of the solutions that were available were still largely reliant on voice technology that sounded robotic. And, you know, I I recognize that as my disease progresses, you know, I will likely one day lose the ability to speak and I did not wanna sound like a robot.
David Betts:And so so I wanted to take advantage of the best technology available and use, you know, leading voice cloning technology if I could. And so that was problem number one. Problem number two was every technology out there still requires a user to type every word they wanna say. And to me that was unacceptable. If we could leverage AI to help the user generate the text that they wanna speak, why would we not do that?
David Betts:And number three, you know, all of the solutions that are available to users today are gated behind our complex health care system. They cost thousands of dollars and they take weeks to get oftentimes. And if we could make a solution available to a user on a consumer grade device that they primarily already own in their homes, and we could make it available for free through relationships with foundation, why would we not do that? And so to me, those were the three problems that we sought out to solve right from the beginning, and and I think we've just we've accomplished that. And so, you know, we we set out to to build a relationship with the leading voice technology provider and embed that in our solution from the beginning.
David Betts:Now the other solution providers are doing that now with API enablement, but it it's taken them a long time to do that. Number two, by building it around an AI engine from the start, cost was not a barrier. Doing this with readily available large language models today, that's not a barrier. We we built that in. I think what the barrier was was exactly what I found throughout my career, Jeff, is innovation within the health systems today, within health systems, within health technology providers.
David Betts:I think the barriers is perceived risk that, you know, we might do harm. We might do harm. And, you know, I sat in a room not too long ago with even some leading innovators who talked about piloting and researching and studying these problems. And I leaned over to a former colleague of mine from Deloitte and I said, don't have time for this. She looked at me a little bit puzzled and I said, no, literally, I do not have time for this.
David Betts:You know, ALS does not wait. This disease moves rapidly and progressively throughout the body. I don't have time to wait to pilot. So I built this solution and I put it out of the market and we're gonna test and learn with real users, and we're gonna iterate on it and make it better in real time for users in in the market. And, you know, what is the real harm?
David Betts:There this solution won't do real harm to users. We'll learn, and I think we overthink the risk. And I think throughout my career in driving innovation in health systems, we too often overthink the risk of what the real harms might be and we let that stand in the way of real innovation. And I I believe that for a long time in the work that I was doing at Deloitte and I think this is challenging that status quo. And so it's a long winded answer to say, you know, we put a we put a solution out on the market that I think challenges the status quo today, and I hope we'll move the industry forward as a result.
David Betts:And that's what we're hoping to do.
Jeff Byers:You know, as you said, once a consultant, always a consultant. I am actually interested. You know, I have to believe that you've been in rooms where large decisions are made or you've been in situations where you need to get buy in from upwards of, like, more than 10 people, you know, on a on a big project or something along those lines. So, like, for anyone that's, like, not in those rooms or, like, not privy to the information that you're in, like, how can you have them understand what decisions are actually being made when it comes to, you know, moving ideas forward or being progressive?
David Betts:You know, as I've reflected on my career, you know, and I've been incredibly privileged, Jeff, to to be in some of those rooms and to lead some of those discussions. And, you know, I think the best decisions get made when people, you know, debate and engage but in in the real heart of the matter. But, you know, what I've learned over the last, you know, eighteen months since I've been wrestling with this is that, you know, I think we have to strip away some of the complexity of some of that decision making. And I think, you know, and I reflect on my career when we've gotten down to really what matters, you know, at the end of the day, what's gonna matter for the people that we're trying to serve? The best decisions that have been made, it it been the ones where we've we've brought it down to that question is, are we gonna make life better for the people that we're serving by making by taking this decision?
David Betts:So when we have chosen to combine organizations, when we've been in an m and a context, when we made that decision on the context of are we making life better for the patients that we're gonna serve, Those have been the best deals that I've been involved in. When we made the decision to implement a particular system or solution, if we've made them on the context of are the humans that we serve gonna be better off by doing this? Those have been the best decisions. And so when I sat down to do what I did with the solution that I built, you know, it was all about, like, how can I help people better connect with the people that they love and the time that they have left? That's all I sought to do, you know.
David Betts:And and then when I think about the decisions that didn't go well, right, we lost sight of that. You know, we got caught up in the complexity. We overthought the risk. You know. We overthought the minutiae of all of the other things that are going on and we lost sight at the end of the day of what it was that we're really trying to accomplish.
David Betts:And so, you know, maybe a long winded way of saying like, boil it down at the end of the day to the mission and really think about the impact of what we're trying to do. And if we can honestly answer the question, like, is going to make a positive impact on the people that we serve and the people that work for us, and we can honestly and authentically answer those questions in the affirmative, then we're making the right decision.
Jeff Byers:Well, you know, as we wrap up, we don't have too much more time left, but I do wanna make sure we got a policy aspect question in here. So, like, when we when you look at, like, potential barriers and you look at the, you know, technological advancements that, you know, are being able to put a a bunch of different capabilities in the hands of of patients, what might you think is, like, one of the more realistic changes policy wise that can be made to help improve the system? And or what do you, you know, pie in the sky thinking? But more so, like, what do you think is realistic?
David Betts:Well, realistically speaking, like right now in front of us, you know, and I I I shared I've spending a lot of time in advocacy is, you know, the senate has in front of them the act for ALS for reauthorization. It just passed the house. Like realistically speaking, it's a bipartisan piece of legislation. It needs to be reauthorized in the senate and I'm confidently and cautiously optimistic that it will be be between now and September 30. That need needs to happen and I'm hopeful that it will.
David Betts:You know, maybe on the next rung up is, you know, that the FDA, as part of that act for ALS authorization, is funding for expanded access programs. And so those expanded access programs are super important for people living with ALS because they enable people living with ALS to get access to experimental treatments that they otherwise aren't eligible for. So, you know, what we need is the FDA to accept as evidence, the scientific evidence that is available from those participants in those expanded access programs to be used in the approval pathways for those treatments that they're getting access to. So that would be step number two is being more flexible in how the FDA uses the data that those expanded access programs make available to them in their approval pathways. And then maybe step number three is, you know, encouraging the FDA to be more flexible about how they look at treatments and therapeutics for ALS in the context of the fact that this is a rapidly progressive, you know, one hundred percent fatal disease.
David Betts:And, you know, they have regulatory flexibility available to them. I, you know, I would encourage back to my earlier comment about, you know, are we overthinking risk in the context of people living with ALS today? And you know, even marginal gains on therapeutics and treatments that are available to us, you know, the cost of waiting on even conditional approvals for certain therapeutics and drugs is significant. And the more, you know, marginal gains that we could potentially make with drugs that are in the pipeline today, you know, even a marginal gain gives us hope and gives us progress. We don't have anything available to us today and so in the absence of that, people are taking unnecessary risks with unproven and potentially unsafe treatment.
David Betts:We need the FDA to be more flexible and so that would be my aspirational hope, coming out of this. So there's three things right there that I think I would put in my my hope basket, in escalating order, from a policy perspective. So I'll close with that.
Jeff Byers:You know, last thing, you know, we are a little over time, but so quickly if you can, like, you wanna shout out for StoryFly Labs, at the very end.
David Betts:Yeah. So, you know, we just announced today, Zoe Chrisloch is joining us as CEO, joining us from, her last role as, president of Magnolia. Many listeners might be familiar with Magnolia's putting helping put Chip and Joanna Gaines, on a firm footing in Waco, and I couldn't be more thrilled to have her on board to help us build this company. And, you know, anyone wants to support what we're doing could go to the livelikelou.org/goose website and make a contribution. Anything you do there is helpful to us to support getting our solution in the hands of people who need it, who are living with ALS.
David Betts:So Jeff, thank you for having me today. Thank you for everything you're doing and appreciate you very much.
Jeff Byers:Yeah. David Betts, thank you very much for joining us today on Health Affairs This Week. If you, the listener, enjoyed this episode, please send it to a friend, and we will see you next week. Thanks all.