Creating a Tinnitus Learning Health Network

Welcome everyone, and thank you for viewing this video. We’ll be discussing advancements in tinnitus care by developing a tinnitus learning health network. My name is David Holcomb and I’ll be your facilitator for the discussion. So let’s get started. Our goal, as I mentioned earlier, is to introduce the concept of a tinnitus learning health network. So our agenda today, we have some speakers with us today. We’ll introduce the panel, and then we’ll get a patient perspective, we’ll move on to a clinician and researcher perspective, and then we’ll actually discuss what a learning health network is. And then we’ll talk about actually building a tinnitus learning health network and give you more information on Stop The Ring, a charity set up to actually create the tinnitus learning Health Network. And then we’ll wrap it up. Okay, so let’s get right on into the panel introductions. So the first person that we have is Jeffery Reagan, who is the founder of Stop The Ring. And he retired from a long career in data analytics and it. And he did that to start this charity 501c3 Corporation called Stop The Ring. Now, Jeff is a heart transplant recipient and that definitely helped him become a big believer in evidence based medicine. And as a tinnitus patient, he thinks that, and believes that the learning Health network framework can really help enhance the standard of care for tinnitus patients, and that’s why he’s doing all this. Our second panelist is Dr. Jim Henry. He’s an audiologist with a doctorate in behavioral neuroscience, which I think is pretty cool. Dr Henry spent 35 years as an auditory researcher with most of his effort focused in on tinnitus clinical research. He’s currently retired, but obviously staying quite active in the field. And then we also have Dr. Donna Murray with us. Shes an adjunct professor at Cincinnati’s Children’s Hospital, the University of Cincinnati College of Medicine, and an independent consultant. Dr Murray is former vice president of clinical programs at Autism Speaks, where she oversaw a portfolio of research and science projects focused in on diagnosis, treatment and systems of care for those with autism. Also at that time, she led activities of the Autism Care Network, which is actually a learning health network around autism. So this is our panel for the day. So as I mentioned in the agenda, we’re going to get a patient’s perspective. So I’m going to ask Jeff, if you step in here you’re a patient tell us a little bit about your journey in healthcare for tinnitus. So thank you, David, for the introductions or for moderating our discussion today briefly to cover some of the highlights of my healthcare journey. I became extremely sick in 2011 with a failing heart and unknown to me, was damaged while I was climbing Mount Kilimanjaro a few years earlier. As a result, I had a mechanical heart at LVAD Place that year. And three years later I received the gift of life, a human heart. And since then I’ve lived a completely normal life, benefiting from the best possible care at the Cleveland Clinic. So as you can imagine, I’m a very strong believer in evidence based medicine and health care and what it has done for many people and not just myself. Okay, so now tell us a little bit about your tinnitus experience and how it presents to you. Right, so my, my healthcare Journey continued in 2017. I was three years post heart transplant, playing competitive basketball, hiking, generally being active and in good health. But during that fall season I developed an eustachian tube infection which made my hearing reduced in my right ear. And at that time my ENT didn’t want to place a tube. Waited about 3 or 4 months before he placed the tube and before that I had a terrible ringing in my right ear. I didn’t know what the heck it was. So I did some googling and determined that I had tinnitus. I’d never even heard of that condition before and that it was not in my ear, it was actually in my brain. After several months, the ENT finally placed the tube and my hearing was restored. But despite that treatment, the damage had already been done. The tinnitus neural network had already set itself up in the right side of my brain or wherever it actually instantiated itself. And I had chronic unilateral right sided tinnitus at that time. Fast forward to 2019 in a similar scenario. Developer. I had an infection in my left ear at eustachian tube, but this time I was a little bit smarter. I told my ENT to place a tube immediately. Hearing was restored much sooner and as a result I don’t have tinnitus left sided tinnitus at all. So this is why I’m such a strong advocate for raising awareness for early detection and for treatment as soon as possible. So that’s part of my tinnitus experience and thanks for allowing me to share it. Absolutely. Thanks. Now I think this is a good time to jump over to the clinician and researcher perspective. So I’m going to bring in Jim. Jim does Jeff’s story sound familiar to you? Most familiar in one sense. And in another sense, every patient has a unique experience with tinnitus. We don’t technically know what causes tinnitus. We don’t know what causes its onset, and we don’t know what causes it to be sustained over time. That’s the brain research that’s going on around the world. Researchers are trying to discover a cure. So every patient’s story is unique, and they describe the onset of their tinnitus associated with something. And it’s usually loud noise, but it could be medications, it could be a car accident, a whiplash injury, a traumatic brain injury, a blast injury a certain illness. And so and so we never really know exactly what causes a person’s tinnitus, but we know what’s associated with their tinnitus. So in Jeff’s case, he had a middle ear infection. And somehow that middle ear infection ended up giving him tinnitus. Now, we don’t know exactly how that happened, but it’s his unique story. My tinnitus started when I played loud music when I was much younger. And the loud music caused damage to my inner ear. The damage to my inner ear resulted in tinnitus. We have lots of theories of why we have tinnitus, but none of them are proven. I think we have a lot of good ideas, and we could spend a whole hour talking about that. So thank you for including me. No problem. Well, so how about telling us a little bit about your experience as a clinician and a researcher? Can you tell us a little bit about that? So just quickly, my background. I’m an audiologist. And the reason I went into audiology was because I have a daughter who’s deaf. And I was just drawn to the field. And. And just because of my circumstances, I ended up in the office of the director of an audiology program. And it just clicked. I wanted to do audiology, but I thought I wanted to be a clinical audiologist. It turns out I got hired out of my audiology program in a research lab, an auditory research lab at the VA Hospital in Portland. And then that’s when I realized I want to be a research audiologist, not a clinical audiologist. So I went back to school. I spent another six years in a doctoral program, got my doctorate in behavioral neuroscience. And those six years I also spent in the lab of Jack Vernon and Mary Meikle. And they were running this laboratory Tinnitus research laboratory, along with a tinnitus clinic. And so those six years got me very interested in tinnitus. And when I completed that program I wrote a grant, got funded to do tinnitus research. That was all the way back in 1995. And then I just got a series of grants and did tinnitus clinical research until I retired back in 2022. And just to give you a little overview of the field of tinnitus I’ve watched it evolve over the years. I would say the methods of Jack Vernon and Mary Meikle and that group in Portland really set the stage for a combination of sound therapy and counseling as being how to treat tinnitus. Now, they did extensive assessments, and they did extensive treatment. Now, I don’t think every patient with tinnitus needs that degree of tinnitus management most. In fact, 80% of people who have chronic tinnitus are not particularly bothered by it. In fact, if you ask them and go, oh, yeah, it’s there, but I just don’t pay attention to it. So they naturally habituate to it. And then about 20% are significantly bothered by it. And those are the people who need help. And that’s a lot of people, because 10% of all adults, at least 10%, have chronic tinnitus. And then if you take 20% of that group, those are the ones who need clinical care. Unfortunately, the standards for tinnitus care do not exist. Credentialing for tinnitus clinicians does not exist. So we’re really at a disadvantage. Patients are at a disadvantage. If they want help for their tinnitus, they could end up in the office of somebody who’s really not trying to help them, but just trying to make a profit. And that’s also the case on the Internet. So we’re really in a situation where different people are doing different things. Some people are doing things better than others. We don’t really have any. Any continuity of standardization between clinics. So that’s what. And I’ll mention more later, but that’s basically what this tinnitus learning health network would address. Well, thanks, Jim. I appreciate that. That sounds like it’s a good time to bring Donna in to kind of educate us a little bit on what is a learning health network. Donna, can you kind of give us an idea about what a learning health network really is? Sure. Thank you, David. You know, learning health network is. A collaborative system designed to continuously monitor and improve health outcomes. It does this by integrating data, clinical practice and research. You know, learning health networks are designed to break down those traditional silos. They include patients, clinicians, families, researchers, all working together. We call it co producing in order to achieve better outcomes. Knowledge is gained by systematically capturing and analyzing clinical data. We call this in the learning health network world, data in once traditionally you have data for your clinical visits. Then if you want to be in a research project, you fill out more forms for a research project and that clinical information and that research data is not connected. In learning health networks we want data in once. We want data to drive clinical care at the time of medical visit. We want data that same data to drive improvements. And we also want data that can stimulate research. So this provides more real world insights from a broader diverse clinical population. A learning health network model is based on the belief that healthcare isn’t stagnant, that we should evolve based on real world evidence and that we should do that in a timely manner. In this system de identified data is shared across the network and this data then informs provides information on to identify what’s working and then that can inform best practices. It also is used to identify what’s not working. And then we can design interventions for change to help close those gaps. This data informs clinical practice treatment protocols and it can identify needs for further research. And so learning health networks actually provide a really solid platform for research. It’s a great partner for traditional research. In short, a learning health network creates an ongoing cycle for learning and sharing that accelerates the translation of findings to practice. You know, in traditional research we found that it takes about 17 years or research findings to be adopted in clinical practice. And that’s really unacceptable for patients. So we need to do better. And learning health networks aim to do that. Thanks Donna. That sounds like a really cool model. I know you did this with autism And I think you have some slides on that as well. Right. So the next slide you know, we identified as an autism network a need to better understand our heterogeneous population. And we needed to figure out what was working for whom and what was not working. And we needed to evaluate the impact of our work. So with support from a Learning Health network team, we held a design meeting with stakeholders. And this included caregivers clinicians, researchers, policymakers and advocacy leaders. And interestingly the families felt very strongly that we needed to address challenging behaviors. Now I will say initially Our clinicians were a little resistant on this because it’s multifaceted, it’s broad, it fluctuates but I will say our families were very persistent and said if you’re asking us what our priority needs are and what impacts our quality of life, its behavior. So we looked at how we could develop outcome measures around that. We determined what data we needed to collect to identify those behaviors and measure outcomes. Now, interestingly, we were able to analyze the first 500 patients and we found something interesting. We found that the majority of our patients that demonstrated these challenging behaviors had co occurring condition of ADHD, anxiety, irritability. Then we were able to narrow our focus and think about if we address these co occurring conditions, how could we then impact behaviors? When we started looking at addressing these co occurring conditions, guess what? We also found out we had no reliable pathway or standard to treat these co occurring conditions in autism. We had to start from developing the pathways, thinking about collecting the evidence around that, implementing those pathways and then applying our QI methodology to figure out how could we reliably implement these pathways in order to be better positioned to look at outcomes. So we know from research and other conditions actually if you standardize care, that alone can begin to lead to improvements and address disparities. So if you go to the next slide, I’ll give you a little bit about some of our results. So this is a little bit older, but just to show you some of the impact. We were able to increase the number of families in our registry by 45%. Families seemed much more willing to participate when they know that that data is also going to be used to drive their patient care. More immediately, we were able to begin to see a reduction in families who reported behavior challenges in the level and severity of those behaviors. We also made improvements in reliably implementing and standardizing care for our three conditions of ADHD, anxiety and irritability. And we also increased reliable screening for child safety concerns. We realized we were not consistently asking about safety concerns, even though realizing that in pediatric autism it is the leading cause of death especially around elopement. So this is a really important sort of secondary finding and we were able to make real changes in testing for those safety concerns. If you go to the next slide, I just want to show you a little bit about how we were measuring this impact. So in the top left corner we were able to look at the entire bundle. We identified markers that would say if you applied this pathway, what specific behaviors would need to be documented to Say you implemented the full standard pathway. And so you can see in the top left, we were able to monitor an all or nothing. If you did all of the markers, you’ve got credit for it. If you missed a marker, you did not get credit. And so this is a pretty high bar to see changes. But we were incrementally making changes in our anxiety. We did this for all of our conditions, but this example is around our anxiety pathway. We were able to then drill down and say of the markers, which markers were we doing better or worse as a collective and as a site. So, for example, the centers that were involved in this work did a pretty decent job of screening or asking about anxiety concerns, but they really lacked consistently providing resources to families. So we were able to really hone in on our improvement work in order to elevate that entire bundle and then even more. So we could drill down by site and by provider. So we could then engage specific providers in doing those work and implementing those standards. So you can see it’s very systematic approach in order to address these issues. Thats great, Donna. I mean now this is in the autism space. Do you see similarities between autism and tinnitus? I do. You know, I’m still learning a lot from my colleagues here, the content experts in tinnitus. But I, you know, I quickly identified as they were talking about some of the issues in tinnitus, some of the similarities in autism that make, you know, researching effective interventions a challenge. You know, this is a heterogeneous group. We think there’s a variety of etiologies there’s a spectrum of severity, a lack of understanding for what might be working for whom high rate of co occurring conditions that may impact those core symptoms, lack of standards of care which then, you know, create geographic for disparities. In other words, the quality of care may vary greatly depending on where you receive services and that symptoms have a huge impact on quality of life, including communication challenges, social engagement challenges. So it seems, if I think about the work, it seems that some of the pathway development and reliable implementation of this work that we have learnings from the Autism Network could be similar, maybe a similar need in tinnitus and also maybe, you know, learning more about segmenting the population of tinnitus patients to better understand what treatments might work for whom. And you know, I just, I really, this is why I think design meetings with stakeholders are so necessary in order to come to some kind of consensus on focus priorities for tinnitus Yeah. I think that you’re starting to hit on the next piece of the puzzle, which is the building of the network. So tell us a little bit about some of those steps that you went through. Well, I think the most important piece of starting a learning health network is it’s really imperative to hear from your stakeholders about what’s important to them. You know, like in the learnings in autism. I think that the clinicians had one thing in mind about what they needed to work on, but the stakeholders came with a very different idea of their priorities. So it’s really important to bring Individuals and stakeholders together to come to some consensus. So to that end, we plan to hold a series of focus groups with some select Stakeholder groups, patients, families, clinicians, researchers, advocacy, and policymakers, just to learn more about the current state of tinnitus management and the challenges, including what they believe needs to be improved to achieve improved care for Patients suffering with tinnitus. Then we’ll be recruiting some centers that want to go on this journey with us. And I think it’s really important in learning health networks to understand that we don’t claim to have the answers. On the contrary, we’re. Looking for partners to help us figure out the challenges and then commit to working as a collaborative group, sharing data and learnings to close those gaps and improve care more rapidly. You know, once we have some interested partners, we will then come together in a large design meeting including them and then those other stakeholders where we’ll outline the focus of the network and think about how and what data we would collect to identify the condition and monitor outcomes. We know that we would continue to need to iterate on these goals. That’s very common in improvement. But it’s a start and I think that’s why we wanted to create the system of ongoing real time learning and sharing. And we welcome motivated partners to the table. Well, thanks, Donna. I appreciate it. It’s great understanding of what we need to do next. And obviously when we’re building this tinnitus learning health network, we need to really understand what we expect to accomplish. And I want to bring Jim in. Jim, what do you expect this type of learning health network for tinnitus to accomplish? Well what Donna just covered is what I would like to be able to say in 10 years that we’ve accomplished with a tinnitus learning health network. You can almost take her word autism and replace it with tinnitus. And that’s what we’re trying to accomplish. We want to do the same thing that they’ve been doing and that other learning health networks have been doing. Right now we have a lack of accountability with tinnitus clinicians and this literally around the world. I mean, we can’t address the entire world, but we can address the United States. We have to start. And Donna mentioned the preliminary steps. We don’t have a network yet, but we’re working toward developing a network. We want to develop a network where everyone agrees they’re going to be accountable to the network. And that doesn’t mean we’re going to tell them what to do. We’re going to realize that clinicians do different things for people with tinnitus. And there are a number of different management approaches that are effective if done properly. So we want to make sure we’re vetting the clinicians to know that whatever they’re doing, they’re doing it well. We’re not going to tell them what to do or how to do anything. But we will need some standards. And those standards within our network will basically be a framework that we’re going to refer to as tinnitus stepped care and tinnitus stepped Care is the concept of providing services to a patient only to the level that they need those services. So you would want to do a four hour assessment for somebody who’s not really bothered by their tinnitus and you wouldn’t want to do treatment for somebody who’s not bothered by their tinnitus. So there’s a stepped care approach and people can still do the assessment they want to do. They can do the treatment they want to do, provided they’re competent providers. So we’re going to put together a network of these people. We’re not going to dictate what they do, but we want them to be high quality high integrity clinicians who are interested in helping their patients. We’re going to have communication between them and it’s going to be an evolving process where by, just by communicating with each other and especially including the patients in that communication process. The patients are our critical stakeholders and we’re going to always be asking them what they think about what has been done for them. Do they like it? Don’t they like it? We also want outcome measures to be consistent between clinics. Now people can do whatever they want, but we would at least ask that they do certain outcome measures in common so that we can compare outcomes between clinics. And then we also want to be able to, and Donna mentioned this, we want to be able to individualize care. We want to know what method works best for what patient. So we need to basically profile patients. We need to know what they’re getting, we need to know how effective it is for them. And through a sort of meta analysis process, we can determine what works best for what patient. And that would be another major benefit of putting this network together. So that’s basically it. I mean there’s a lot more to it, but I think we’re probably running out of time, so I’ll stop there. Thanks Jim. I’m going to bring back in Jeff. So Jeff, tell us about your vision for, for Stop The Ring and the Tinnitus Learning Health Network. Sure. Thanks David. First, let me speak to the fact that Learning Health Networks has been applied to many other disease conditions in addition to autism that Donna was referring to. Donna brings a lot of experience from that network and it’s been duplicated across many networks, at least in general. Concepts have been as Jim points out, we need outcome measures that are specific to tinnitus and we’ll derive those over time as we work with focus groups and we especially work with patients. We see this list of learning health networks on the screen now. It’s our hope to have a small tennis learning health network operational sometime in 2025 and a more mature one within a few years. Hopefully we beat Jim’s tenure marker and allowing for a tinnitus learning health network to actually be added to this list here. You can go to the next slide. So as Jim and Donna both have mentioned, the current siloed approach to tinnitus research in clinical care needs to come to a close and we need a more cohesive working community framework instead. The voice of the patient needs to be amplified. It really isn’t being done today. Learning health networks provide that capability to amplify the voice of the patient. Donna had presented this slide earlier and I believe it’s so important to share it here as well. It summarizes that it’s really three actors in play. Patients, researchers and clinicians all together, all working together in a community that strives for outcomes, better outcomes for the patient. It’s an iterative process. As Donna pointed out. We learn, we share, we teach, we improve. And we’ll build this network and it’s going to improve over time. And I think that if we can get this model in our mind, it’ll be very helpful. Clinical outcomes are the key and using quality improvement techniques, I think as Donna pointed out, is a big part of learning health networks. We’ll be collecting data, obviously it’s going to be anonymized within the constraints of HIPAA. But more importantly we’ll be focusing on the patient, what their needs are and how we can better effect patient centered clinical effectiveness research. CER So that’s what I have for that slide. As a final summary I might add that I’m a former IT professional. When I think of learning health networks, I think of open source software where the working community iterates on goals and democratically decides the direction of a given platform. This is very much what a Tinnitus learning health network will do and how we approached and created our presentation for today. So rather than delivering a single structured PowerPoint slide filled with content, we decided it’d be best to have representative actors from our proposed tinnitus learning health network is to speak to the various parts of this network. You know, I am a patient, I do suffer from unilateral right sided tinnitus. Jim is world known and is a clinical tinnitus researcher. And Donna is also extremely well respected in the learning health network community. So we believe we’ve brought very competent actors in this whole network to explain in general terms how it works. And we can drill into details in later symposiums and webinars. So that’s all that I have for today. I would, I would say that you know, we, we think we have something here that’s radical, it’s new. Some people may not like it, but we believe it is the way it is. A way. It’s different from the past. It’s a different way to look at tinnitus. It’s a different way to rethink tinnitus. Thanks. Well, I just want to say thanks as well to everyone who’s tuned in to watch this video and if you stuck around for the whole thing, thank you so very much. If you want more information, you can visit us at the website, our LinkedIn, Facebook, you can email us and of course you can always email Jeff as well. And we are making some handouts available as well. So. And most important thing, if you or someone you know is suffering from tinnitus, please seek help. Thank you very much. For some final thoughts. As David mentioned, if you or someone you know suffers from tinnitus, please see your audiologist or get a referral to one. Early detection, just as with any other medical condition, is extremely important, my own personal experience underscores the brevity needed for this. We appreciate everyone who’s watched our presentation today, and we hope it raises awareness and attention of the need for Affinity’s Learning Health Network to help create a real standard of care for tinnitus patients. Also, as David has mentioned, for additional information, please check out our website@stopthering.org Also, if you have any direct questions, please feel free to reach out to me or anyone on our team. Lastly, on behalf of the team at Stop the Ring, we thank the folks at Hearing Health and Technology Matters and at Okoyo for giving us this opportunity, present our mission and vision. And also thanks to Dr. David Holcomb for moderating our presentation for today. Thanks everyone and have a great day.