Building A Tinnitus Learning Health Network (TLHN) To Improve Care

The ringing is real...and so is the plan to fix how we manage it. Blaise sits down with Jeffery Reagan, a heart transplant survivor, tinnitus patient, and founder of Tinnitus Learning Health Network, to share a practical blueprint for transforming tinnitus care through a learning health network that centers outcomes, empathy, and shared data. Instead of waiting years for guidelines to catch up, Jeff shows how patients, clinicians, and researchers can collaborate in near real time to reveal which therapies—CBT, TRT, sound therapy, hearing aids—work best for specific subtypes and life contexts.

We explore the watershed moment that pushed Jeff to act, the structure of a learning health network, and why placing the patient’s voice at the center changes everything. You’ll hear how standardized measurement with tools like the Tinnitus Functional Index and Tinnitus Handicap Inventory lets clinics compare results, reduce disparities, and end the dead-end phrase, “there’s nothing we can do.” Along the way, Jeff introduces the team guiding this movement, including leaders like Dr. James Henry and Dr. Donna Murray, and outlines concrete milestones: pilot sites across VA and academic centers, a rebrand to the Tinnitus Learning Health Network (TLHN), and a path to insurer buy-in through real-world evidence.

If you or someone you love lives with tinnitus, this conversation offers both hope and a plan. We talk funding models, data culture, and how machine learning can guide (not replace) clinical judgment to speed up the path to relief. Join us as we turn fragmented efforts into a connected community that learns, shares, and improves together. Subscribe, share this episode with someone who needs it, and leave a review to help more people find expert-backed tinnitus care built on real outcomes.

Visit our website and take our quick online hearing screener. 

And if you're ready to take the next step, our online hearing care provider locator can help you find a trusted hearing care professional near you. Taking that first step can make a meaningful difference, helping you stay connecting to the people and moments that matter most. 

Connect with the Hearing Matters Podcast Team

Email: hearingmatterspodcast@gmail.com

Instagram: @hearing_matters_podcast

Facebook: Hearing Matters Podcast

Transcript

Opening And Why Tinnitus Matters

Blaise M. Delfino, M.S. - HIS 0:00

Welcome back to the Hearing Matters Podcast. Today we're diving into a topic that impacts over 50 million Americans. Tinnitus. For many, it's a daily struggle with no clear answers, but my guest today, Jeffrey Reagan, is working to change that. Jeff is not only a heart transplant survivor and tinnitus patient himself, but also the founder of Stop the Ring, a nonprofit leading the change to revolutionize tinnitus care through the first ever tinnitus learning health network. He's bringing together patients, clinicians, and researchers to break down silos, share data, and drive real solutions for those living with tinnitus. We'll talk about Jeff's remarkable personal journey, the mission behind Stop the Ring, and how his leadership is helping reshape the future of tinnitus care. Jeff, welcome to the Hearing Matters Podcast.

SPEAKER_01 1:00

Thanks so much, Blaze. A pleasure to be on the show and thanks for the invite.

Jeff’s Heart Transplant Journey

Blaise M. Delfino, M.S. - HIS 1:05

Jeff, you and I have been connecting now for a couple of months, talking about this episode and to ensure the information that we share with our community really supports Stop the Ring and the mission and what we want our listeners to walk away with after they tune in to this episode. And I'm really liking the structure of the show that we have set up for our listeners. So let's dive into Jeff, your journey to advocacy. You've shared with me your personal story. I mean, you have lived through extraordinary health challenges, including a heart transplant. And then you later developed tinnitus yourself. How did that lived experience shape the way that you personally think about health care and, you know, ultimately lead you to create Stop the Ring?

Mental Resilience And Support

SPEAKER_01 1:59

Sure. It's a pretty long story, but I'll try and keep it short for the listeners here today. My journey really didn't begin with synodists, just so happened that's part of the journey now. But my personal healthcare journey began unexpectedly for me. I was an avid outdoors person, climbed some of the highest mountains in the United States, and then tackled Mount Kilimanjaro in Africa in 2007. So as I got near the top, I ran out of gas, and I thought, wow, this is kind of nuts. And as it turned out, I was having a heart attack on the mill. Although I didn't realize, but I thought it was altitude sickness. So came back to the States, was misdiagnosed with GERD-induced asthma. This is in 2007. Fast forward to 2011, four years later, I actually did have a massive heart attack. I was living in Columbus and Ohio, and they couldn't keep me alive at a level one trauma center. So I was air cared at the Cleveland Clinic, and I was not a candidate for transplant at that time. I was placed on end-of-life support for 20 days on an ECMO machine. And finally they decided they had to operate because you can only stay in ECMO for a couple of weeks before clots can form in the machine. And so I was given a respite, if you will, it's epiry solution, a left ventricular assist device, which essentially is a mechanical heart inserted in your body. So for three years, Blaze, I was a biotic human being. I didn't have a pulse. I was battery powered, but I wore a vest that concealed the batteries and went back to work. And finally in 2014, I received the gift of life, a human heart. I will tell you, walking into the ICU is better than being carried into the ICU on a stretcher. But anyway, the takeaway from all this, I learned from the great care that I received that I wouldn't be alive today if it weren't for people doing their job in an extreme high level of excellence. This goes all the way from the person mopping the hospital floors, keeping germs away, to nurses drawing blood and being empathetic to the surgeon who placed the heart into my body. The whole value chain, custody of chain of my body, I thought, wow, what if one person didn't do their job correctly? I wouldn't be here. So that kind of set the tone for how I viewed heart or healthcare, because prior to that, I never was really in healthcare. I led a pretty healthy life. So that set the tone, and that gets carried over to where I am with tinnitus today. But I think you want to talk about that in a different kind of way. So I'll throw it back to you.

Blaise M. Delfino, M.S. - HIS 4:27

Well, Jeff, that must have been, for lack of a better term, a very scary time in your life. The unknown, how do I respond to this? To go three years, that's a long time. That is absolutely a long time. We know that oftentimes patients who present with tinnitus might battle anxiety, depression. What was, you know, what brought you through that challenging time mentally? You were going back to work, so I'm sure that was also stressful. How did you get through that dark time?

SPEAKER_01 5:09

It was very difficult. I think having family and friends nearby, support structure, belief in God, being lucky enough to have the best heart care possible in the United States, and praying for better days ahead and believing in better days ahead to get through that time. And I actually wrote John McCain a letter because he served as a POW for five years in Vietnam. He didn't have pretty nurses looking over him. So I wrote him a letter thanking him for his service to our country. And I can only imagine what he went through. Mine was simple compared to what he did. So it gave me strength and faith. And I just truly believe that there were better days ahead. I fought for those days, and here they are, you know, 14 years later.

The Kent Taylor Turning Point

Blaise M. Delfino, M.S. - HIS 5:54

And you're taking that experience and you're paying it forward because you personally know what it's like to go through, you know, being a heart transplant recipient, living with tinnitus yourself, and you and your team at Stop the Ring know that there is a challenge and a problem that needs to be solved. And I really I'm excited to dive deep into that with you today. I'd like to dive into the watershed moment, no pun intended there, but you've shared that the tragic passing of Kent Taylor in 2021 was really a turning point for you. Can you just can you walk us through that moment and like why that moment compelled you to act and really begin pushing for a tinnitus learning health network?

SPEAKER_01 6:46

Sure. I mean, I presented with the unilateral right side at tinnitus first in 2017 and then later started developing the left side. But I thought about creating a learning health network for tinnitus because I've been exposed to the framework at Cincinnati Children's Hospital when I did volunteer work for them after my transplant. I provided project management and data modeling experience to the hospital. And I learned of the framework there, and I intuitively saw how powerful it was. And I thought about standing up at Tenance Lawyering Health Network in 2020, but really didn't act on it. And then I thought in 2021, I'm really going to do this. But that the watershed movement, as you pointed out, Blaze, is that when Kent Taylor committed suicide, he was a very visible person. I didn't realize at that time that people could commit suicide from tendency. But that told me that this really is a debilitating condition that needs to be addressed because, as you pointed out, over 50 million Americans are affected by it. And one to two percent of those are really debilitated by it, right? But again, that was the moment that I decided to really get involved.

What Makes Stop The Ring Different

Blaise M. Delfino, M.S. - HIS 7:55

So much to unpack there. I think that too often the majority of those living with tinnitus may not realize that it's a scale. Like how severe is your tinnitus? And that's why it's so important that we have these conversations, because we have to do better in terms of raising awareness. Yes, the technology is so important. Today's technology is a third of the process, though. As hearing care professionals, I myself, a hearing care professional, we have a duty to educate our community, not only fellow hearing care professionals, on the latest evidence-based practice as it relates to tinnitus management and whether it be TRT training and of the like, but to educate our community on what tinnitus is, how it can affect patients differently, and that there is this severity scale. Some patients might say, well, I have a mild case of tinnitus. It doesn't affect my everyday activities. But on the other side, I can say, this is debilitating to me. Jeff, you and your team, the problem you're trying to solve is raising awareness of these learning health networks. Q, stop the ring. So for listeners who may be hearing about Stop the Ring for the first time, what is this nonprofit Stop the Ring? And how does it differ from traditional tinnitus advocacy efforts? Because there is a lot of them out there, but yours is absolutely different.

SPEAKER_01 9:30

Right. We truly believe we are different, Blaze. Where we come in is a learning health network by nature doesn't focus specifically on research. It focuses on outcomes and it uses quality improvement techniques, performance improvement techniques that have invented and scientifically proven in many other learning health networks. So while research is very important also within a learning health network, the primary focus is on helping the patients get the best type of treatment that suits them best. That means finding out patient subtypes and subgroups and making sure they get the best interventions that empirically have been shown through evidence to work for those types of patients. So, you know, we do fundraising the same way other tendency organizations do. We reach out to industry, people like Microsoft and Apple and what have you. So there's a mix of funding that can help us get to the next level. But we do, we are quite different from the other organizations in that we have a very structured approach that has been proven out for over 20 years now and many other learning health networks.

Blaise M. Delfino, M.S. - HIS 10:42

Jeff, just from our past conversations, what I gather from you is you are a data wizard. You understand data, but not only understanding it, your ability to read it and then apply what that data means to solve a problem. And to me, that's what I'm seeing, what you and the team are doing at Stop the Ring. So you're focused on outcomes. Before we dive a little bit deeper into that, you know, in terms of your leadership and collaboration and the patient voice being at the center of these learning health networks, you've been immersed in these learning health networks since your time, volunteering at Cincinnati Children's Hospital. How in the world do these networks actually work? And as it relates to tenetist care, why do you believe there's such a game changer?

How Learning Health Networks Operate

SPEAKER_01 11:40

Great question. The crux of a lot of this is actually collecting data. You know, people have different approaches to solve different problems, but rarely are you able to collect all the data blaze in one place where it can be sliced and diced by demographic, for example, by other types of patient subgroups, and slice and dice also by tendency subtypes. And then thirdly, slice and dice by the types of interventions that might be used for those particular patients. So learning health networks are really think of it as three main actors. The patient at the center, is again, we're focusing on patient outcomes, but as legs to that, what I call the golden triad, are clinicians who are on the front line. I mean, you've been a clinician for many years. You guys serve on the front lines in terms of diagnosing patients and treating patients. And then the other leg is the research leg. And again, while we're not a research organization, that is part of it. So essentially, it's three main actors working together in what I would say is a working community. And they all share best practices across the network because in the past we've had siloed research. This way, patients can actually have a voice into what type of research gets done. For example, over the last eight months, we sent out questionnaires to almost a dozen patient support groups, and by far away, the largest request was to do research to reduce loudness of tennis, right? And there was plenty of other answers too, but far and away, that was the biggest response that we got. So what we want to do is involve patients or amplify the voice of the patient, and also allow for this collaboration between researchers, clinicians, and patients. So that's how a learning health network works at a high level. And when you get multiple clinics involved talking to each other, then they can compare notes and improve, not only improve the quality of care, but reduce the disparity of care. Those are the two big wins. You improve the quality of care and you reduce the disparity of care of care.

Blaise M. Delfino, M.S. - HIS 13:57

Jeff, so much to unpack there. What I'm hearing from a clinical standpoint, I love the fact that the patient is at the center because the patient should always be at the center, not only in hearing health care, but healthcare in general. But I see this as a way that you're building community and you're able to connect patients with providers who are implementing best practices. And best practices have been around for many, many, many, many years in hearing health care. It's nothing new. Unfortunately, too many hearing care professionals have not been implementing best practices. So I love this overall holistic approach. The hearing care professionals are being pragmatic about their implementation of best practices. But these patients then are in a community and are able to then connect with others who present with tinnitus as well. And I believe you had mentioned, you know, light at the end of the tunnel when you were going through your pre-heart transplant and having faith and just being connected and having that belief. I feel as though counseling patients who do present with tinnitus, a lot of it is counseling, cognitive behavioral therapy. So leaning into that community has to yield great patient outcomes.

SPEAKER_01 15:21

You have to present hope, as we all know. Because if you don't present hope, what we've heard people say, and many patients say, we're tired of hearing, there's nothing we can do for you, right? When we know that there's therapies that do work, TRT works, CBT works, you know, some sound therapy works, people get relief from hearing aid. So there's many different options. What may work for one patient might not work for another. But the bottom line is we do have options, and that hope has to be presented to patients, right?

Best Practices, Community, And Hope

Blaise M. Delfino, M.S. - HIS 15:52

Absolutely. Absolutely. And this is my disclaimer here, you know, for hearing care professionals tuned in right now, and this is a conversation that I had with Dr. Alex Tarvin from Elevate Audiology in South Carolina, actually. If you are an audiologist or hearing care professional and you don't specialize in tinnitus, and a tinnitus patient comes to you and you're not comfortable working with them, please make that proper referral. Because working with a tinnitus patient is very different from working with a patient who presents with bilateral sensory neural hearing loss with no presentation of tinnitus. So I will get off my soapbox there. Let's talk about Jeff, the leadership and collaboration at Stop the Ring. You have world-class leaders like Dr. James Henry and Dr. Donna Murray on your board. How important is collaboration across patients, clinicians, and researchers to the success of this initiative?

SPEAKER_01 16:56

Well, it's crucial, Blaze. I mean, every person in the organization has a voice. Every person has a unique story. My own story is unique as is yours as a clinician, uh, as is Dr. Henry as a researcher, who also has continuous, by the way. And you know, Dr. Donna Murray comes from an approach where she led the Autism Learning Health Network for seven or eight years. As we know, autism is also a neurological disorder. So there's some carryover from you know the type of disease that she's used to treating and researching. So Donna is an incredibly valuable member of the team because while I can speak the learning health concepts very well, because I've been trained by people at Cincinnati Children's. I worked for a Learning Health Network IT company for a while. John Bostick, who connected me to Cincinnati Children's, where I retired after my heart transplant. That's where I learned about the framework. And John was actually building out an IT company, and I was actually helping him do it to actually create the IT infrastructure for these learning health networks. So, and I actually got the help with the data modeling and all that. But yeah, the patients, the researchers, you know, the clinicians, that's they're all important components. And the team that we put together so far is small, but we're growing. And of course, Jim Henry needs no introduction. This his reputation and experience in the field speaks for himself. So I reached out to Jim in 2021 when I first got serious after Kent Taylor's suicide. And Jim wasn't quite ready because he was still working full-time at NCRAR. But he's been a great tutor to me, he's been a great mentor to me. As I've trained him on learning health networks, he's trained me about everything audiological and genetic related, right? Jim retired, and we're lucky to have him. He and Donna both joined in 2023. In 2024, we filed for uh nonprofit status and got that within a record 10 days, I think. And we've been on the move ever since we've added Dr. David Ocom to the team. David has uh has dual PhDs in organizational theory and a couple of other areas too. He's a data culture expert, and data culture is something that's part of every learning health network. So David's contributions have been huge. And more recently, Dr. Rebecca Lewis from the University of California, San Francisco. Becky's been leading our pre-design sessions. And we've been talking to Becky for the better part of this year, and I'm proud to say that Becky's joined the team too. We're very excited to have her on board, all the experience and expertise that she brings. So we're growing, and we've also added another person too. I ironically, I met him doing astrophotography at 2 a.m. one morning here in Cincinnati. I was packing up the leave and the spell pulls up, starts setting up his gear. I sprang up a conversation with him. As it turns out, he's a retired bioinformatics professor from Vanderbilt. And well, Jeff Gordon is part of the team, too. And he also Has won national awards for his ability to do training and such. So we're building out the team. It's a process, but we're very excited and looking forward to this help move the needle forward in any way that we can.

Building A World-Class Team

Blaise M. Delfino, M.S. - HIS 20:12

So, Jeff, talk about first class team and knowing Dr. Henry, who has been on the Hearing Matters podcast, I love and admire his passion for patient-centered care, his, of course, deep understanding and knowledge. I mean, he is a leader in Intenis. And we need to thank him for everything and all that he does and continues to do for this industry because so many patients have been helped as an extension of Dr. Henry. Let me ask you you had said data culture. What does that mean? And how is that going to help the patients who visit a stop the ring learning health network?

SPEAKER_01 20:58

First, I'd like to say too, Blaze, that over the next month or two, we're going to be rebranding away from Stop the Ring fully to Genetis Learning Health Network. So we'll have a new website, it'll be TLHN.org for listeners in a month or two from now. And so data, as we talked about, is very important to all this. But when I was in the hospital for four months back in 2011, I thought to myself, you know, I'm with really competent people here. But, you know, the empathy that these nurses are showing me, I have to tell you, that's right up there in equal terms to their competence, right? So at the end of the day, the patient comes first. We need to be empathetic. We need to show that there's hope for them. We need to ask for them to provide their data so that we can help not only them, but future patients by aggregating that data, noticing patterns in the data that again will help us better match up interventions with particular patients and subgroups. So the patient really is the center of all this. We want to get them involved with risk research. And again, we don't want them to feel that they are just the data point with respect to data culture, even though data is hugely important in the whole framework, right?

Blaise M. Delfino, M.S. - HIS 22:12

That's Jeff, again, to your point and the why behind creating this learning health network, it's for the patients. They are at the center. So ensuring that they know, feel, and believe, and understand that they're not just another data point, that me providing this information is actually going to help me and my overall health as it relates to my tinnitus, that's really empowering it and has to be empowering for that patient. Kind of leads me into breaking down silos, right? So tinnitus research and care can often feel fragmented. So how does Stop the Ring work to bridge those silos between research, clinical practice, and you know, patient experience?

Data Culture And Patient Voice

SPEAKER_01 22:53

First of all, we are not going to be the only organization doing research. There's many great organizations doing research. The ATA, the tennitus research initiative, and Europe. More recently, Tennotus Quest has come on shore. I liken them to the British rock invasion of the 1960s. That's a side note. At any rate, many, many organizations are doing research, and Europe actually had ESIT for a while, the European, it was a specialized university they created for tennis PhD candidates and so forth. They all had to do their own research. So I think that what we'll see going forward, and this will include us too, is all these organizations, I think, will touch base more often and find more directed research that addresses more patient concerns. There's always going to be basic science that needs to be investigated that's far, far away from the clinic, right? You and I previously spoke that in some cases it may take up to 15 or more years to get research into the clinic for different disease conditions, and we're seeing that shortened all the time. But the idea is we want to shorten that even further, get the patients involved too, and really find a way to measure how are we really empirically improving patients' lives. You know, we have the patient reported outcome measures, that's hugely important. And until we actually discover and get it into the clinic, an objective way of measuring tinnitus, which we have none at this time in the clinic and won't for some time, we have to rely on what the patient tells us. So we need to empower the patient to tell us how they feel, how we're helping them, and go from there.

Blaise M. Delfino, M.S. - HIS 25:14

Jeff, for the average person living with tinnitus who may feel hopeless or, you know, like there are no good options. What impact do you personally hope, you know, Stop the Ring and TLHN will have in the next few years? Because this is a massive undertaking.

SPEAKER_01 25:36

It is. And you know, it's a work in progress place. It's gonna be a lot of hard work involved. We're gonna have to get funding for it. But what we want to do is create a ray of hope, if you will, where perhaps none has existed before. You know, patients that get turned away by ENTs and audiologists telling them that there's no nothing we can do to help you. Whereas, you know, as we build this network out, and I'm hoping that we can get five to seven pilot sites in place sometime in 2026. And that would hopefully be a mix of several VA sites and maybe three or four academic research institutions like UCSF or maybe Vanderbilt, maybe Ohio State, others, of course, being considered, that we could build this small network, build on successes there, and then several years out, we will definitely have identified which interventions work best for which subgroups of patients. So from a clinician perspective and a patient education perspective, they can be better guided towards the right type of care, get them to the right type of care more quickly, and make them feel better sooner, right?

Breaking Silos Across Care And Research

Blaise M. Delfino, M.S. - HIS 26:46

Jeff, some of our listeners tuned in might be wondering who pays for this? What does that look like? If you're comfortable sharing, how will these networks be funded? I know earlier you had said, you know, grants, things of that nature, but who essentially pays for this project? And the reason I ask is because, of course, setting up these pilot sites that's going to display, okay, you know, after three, four years of running this and collecting data and the patient outcomes report X, Y, and Z, which are all positive. That's obviously the hope. Who's funding this? And then what does the overall scale look like with Stop the Ring and the Tenetus Learning Health Network?

SPEAKER_01 27:30

Well, I will say this, you know, right now today, thank you for all the small donors who've donated to the cause and thank you to my board members who contributed and others. And also I've threw a lot of my own money at this so far. At any rate, so it's going to be a mix of what we discussed earlier. But as a learning health network builds credibility, what we see with other learning health networks too is they may start charging a subscription fee, right, to various institutions. Because at the end of the day, we want insurance underwriters to also start covering the condition where they're not doing so today. Now, it's so much not a problem with the VA because the vet the veteran status, the VA paid out 6.2 billion last year. Think about that number for a moment, 6.2 billion. On the private sector side, and you can certainly speak to this, we really don't have any insurance coverage. So it is hoped that as we start to show data that shows real, tangible, measurable results that actuaries like to look at, that the condition will eventually be underwritten so that we'll get better treatment compensation for providers and the patients alike. So again, it'll be a mix of seed funding from wealthy individuals, from institutions, from industry folks. And then as we go on, that that revenue stream will still be applicable, but we often see subscription-based services too, depending on the dynamics of the economics involved.

Blaise M. Delfino, M.S. - HIS 29:02

I appreciate you answering that question. And again, the entrepreneurial mind in me is like, so how does that model work? I like the subscription model, of course, with working and collaborating with underwriters with these insurances, of course, creating that greater access and affordability to hearing health care. We believe at Hearing Matters Podcast, and we have since 2019, when we actually, you know, started the Hearing Matters Podcast, hearing health care is best served in the hands of the hearing care professional. I believe that personally, clinically, professionally. I absolutely wholeheartedly believe that. So I love the fact, Jeff, that the tinnitus learning health network is implementing that same model. Visit your hearing health care professional, that professional who is trained on tinnitus retraining therapy and the like, who is trained on counseling patients who do present with tinnitus. So in the tinnitus learning health network, is it your goal to have a psychologist on staff who is specialized in CBT to then, you know, work on strategies to help with patients who present with tinnitus?

Near-Term Impact And Pilot Sites

SPEAKER_01 30:14

Yeah, I think that's a good question. And I think as we get funded, I think a role like that would be really important because CBT, as you know, is shown to be more effective than just about everything else, except perhaps maybe TRT is very close to it. I think as we grow that having someone who's CBT trained and maybe even someone who's TRT trained on staff could be part of the solution in terms of rolling out education for patients and also directing how do we measure improvement? Are we going to just look at TFI scores, THI scores? Are there other measures that are going to be developed by the network? So just to answer your question again, we will probably have someone on staff who has a CBT background, maybe someone on staff who has a TRT background, too, because these are therapies that are known to work, right? We want to maximize those. Now, are we going to ask all the people on the network to use CBT or TRT? Heavens no. There's still an element of freedom involved, and that brings up the tentative step care model that Dr. Jim Henry has created, really that fits perfectly within the network. And I anticipate we'll be using Jim's tentative step care model. I look at it as like open source and software. You can plug and play a lot of modules freely because you know how you're measuring each other, right? As long as clinics we can get them to agree on the right instruments to measure progress by, that's golden. Because then we can get real-world data from all these different instruments, right? Measuring instruments, and combine that data and be able to find patterns. And again, think of a tennetus learning health network as a near real-time clinical practice guideline. You know, we have clinical practice guidelines that come out every 10 years, but we'll be collecting data constantly and we'll be sharing best practices probably at periodic intervals, probably monthly, I'm thinking. So think of a clinical practice guideline evolving monthly based on real data.

Blaise M. Delfino, M.S. - HIS 32:15

I like that a lot, Jeff. And what I'm excited for, obviously, this entire project, but when you're able to see patterns from the data, and especially, you know, what percentage of our patients went through TRT, CBT, what seemed to work better? You know, why did it work better? Is it the counseling? So to be able to string these different hypotheses together is exciting. But the reason why it's so exciting is all the patients that you're helping make an educated decision regarding their hearing health care. So, Jeff, your vision for the future, fast forward five years from now, what does success look like for the Tennessee Learning Health Network?

Funding Models And Insurance Pathways

SPEAKER_01 32:58

Great question. Well, first of all, I hope that I'm not leading the network five years from now. I hope it'll be in good hands of someone younger. That's one of my goals. And I will still be around and you know, helping and providing some insights, as I'd love to do. But in five years, I'd love to see the network be 30, 40, 50 sites in size. You know, maybe the 20, 25 academic research institutions, maybe 10 or 15 VA clinics. And then we'd also like over time to add in large private practices. What I mean by that is private practices that have more than one office, maybe, you know, uh something like that has 10 practices under their belt. Because I think that's we don't want to leave them out. We don't want to leave private practice out. And we'll be sharing data all the time with everyone. We'll be writing papers, we'll be publishing papers with our findings. So we'll be sharing that worldwide. But we want to see, I'd say, 30 or 40 sites involved. I'd personally like to see artificial intelligence and machine learning be actively utilized because we have sufficient data for them to work with, and not as an end-all be-all, because I just use my GPS as a guide, for example, but to help guide clinicians and guide patients to better inform treatment paths more quickly, more efficiently. And I'd love to see again uh tinnitus being reimbursed by insurers. That was one of the things I spoke about in 2021 when I presented this concept at Bridge Steilers conference. We need insurance to step up, but we they won't do it until we present real data. That's what we're gonna do.

Blaise M. Delfino, M.S. - HIS 34:36

Jeff, before we close out for the day, what is that number one takeaway you want our community to walk away with?

SPEAKER_01 34:43

First of all, for tinnitus patients, please know that there is hope. For tennis clinicians, we're gonna be working with you closely to help make this network. Uh, for researchers, we want you involved as much as possible. Again, this gets back to the golden triad of patients, researchers, and clinicians. And most of all, I just want people to take away that this is a novel approach coming in from a completely different vantage point. Me coming from a data modeling, data analyst, the data warehousing perspective. I looked at the field and saw how disjointed it was. And this framework will help allow the field to become better organized and to mature, in my view. And at the end of the day, patients are going to reap the benefits.

Blaise M. Delfino, M.S. - HIS 35:28

Jeff, thank you for sharing your journey and you know the incredible work you're leading through Stop the Ring to be rebranded as Tinnitus Learning Health Network. My friend, your story is absolutely a powerful reminder of resilience. But, you know, really what's possible when patients, clinicians, and researchers really do come together with a shared mission. For anyone listening who is living with Tinnitus or knows someone who is, there is real hope in the vision Jeff and his team are building. You can learn more, get involved, or even support the mission by visiting stopthering.org. As always, thank you for tuning in to the Hearing Matters podcast. Until next time, take care of yourself and each other.