Advancing Tinnitus Care: The Power of Learning Health Networks Explained

Welcome to this Week in Hearing. Hello, I’m Bob Traynor, your host for this episode, which touches a lot of us at the heart of where we have been wanting to go with tinnitus and tinnitus treatment for many, many, many years. Today, my guests are Jeff Reagan from Stop The Ring in Cincinnati, Ohio, and Dr. James Henry who’s their chief scientist. And so, to begin today, Jeff can you tell us a little bit about Stop The Ring and where it came from and a little bit about how that transitions into another group called the Tinnitus Learning Network? Happy to, Bob, and thank you very much for having us on your show. We’re greatly indebted to you for that. First of all, make a long story short, I ran into some health problems after a long IT career. I had a heart attack, had a left ventricular assist device placed in my body. I lived with that for three years, and then ultimately had a heart transplant in 2014. So, needless to say, I am very well grounded in evidence-based medicine where I wouldn’t be here today. So I’m very lucky. I did not even know what tinnitus was until 2017. I lived in normal life other than my heart issues, and I had reasonably good hearing, as far as I could tell. And then 2017 came around. I had a number of stressors in my life, and also on top of that, I had some blocked eustachian tubes, which gave rise to tinnitus, of course. And in my case, I have right sided unilateral tinnitus. There’s an entire backstory why I believe I don’t have it on the left side, but believe that maybe for another discussion. So after I retired, after the heart transplant in 2014, I did volunteer work for Cincinnati Children’s Hospital, and they were the first organization to create learning health networks, at least the framework for that. And that’s where I learned about the framework of learning health networks and what they can do. So I really didn’t act on that until 2021, the year of COVID And I didn’t really follow up on that further until, unfortunately, Kent Taylor committed suicide because of complications of COVID 19, and his own tinnitus. So that’s when I became really serious, because not only did I have the condition, but I saw that it could actually kill people by suicide and what have you. So I created a website, I got an email address. I started to do a deep dive research tinnitus and wrote my first article in 2021 on tinnitus. And then I also reached out to many people, including Jim, Rich Tyler and others. And Rich actually invited me to present the idea at his 2021 conference in Iowa. So I had an opportunity in 2021 to begin evangelizing, if you will, what learning health networks are and why. I think that they can help us find better interventions for tinnitus, if not cures. So for a long time since then, I’ve been networking all across the globe and explaining what a learning health network is and how it can help tinnitus patients. And that pretty much brings us to 2024, when Jim joined the organization as our Chief Scientific Officer. And Dr Donna Murray, who is an expert at Learning health networks, she led the Autism Learning Health network for many years, also joined the organization. And the three of us, along with another couple of folks, are working on building out the framework for a tinnitus learning health network. So that’s really where we are. That’s brought us to today without providing too many details and how I became involved, because I strong believer in evidence based medicine, because of my own health issues, and also because I am a tinnitus patient myself. Well, you know it is often people that come from outside that contribute the most to many kinds of things that are mysteries and so on. And it’s fabulous that you become the founder of the Tinnitus Learning Health Network. And now Dr. Henry is well known to many of us that have been working in tinnitus for many years. Jim can you tell us a little bit about your background for some of our colleagues who may not realize your wealth of experience and information for all of us that do clinic each day? Sure. And thank you for having me on this program also. It’s a pleasure. I have a daughter who is deaf. And when she was five years old, I decided to go back to school, and that’s what got me interested in audiology to begin with. So I got a master’s degree in audiology. I got hired at the VA hospital in Portland, that was 1987, by doctor Fausty and doctor McDermott. And they had a small auditory research lab at the time. And I immediately realized that I loved research, and I wanted to do research. I did not want to be a clinical audiologist, much as I respect clinical audiologists, I wanted to do. I wanted to become a research audiologist. So I went back to school at Oregon Health and science University. That was 1988 and I ended up in the lab of Jack Vernon and Mary Meekle and Robert Johnson, that whole group at the OHSU Tinnitus clinic, that was the first tinnitus clinic in the world. And I had the great privilege to spend six years in that lab while I was working on my doctorate. So when I completed my doctorate I was fully vested in tinnitus and studying tinnitus just because of that six year experience with them. And I wrote a grant and got it funded in 1995 on tinnitus measurement. And that launched my career. And I did tinnitus research up until two years ago when I retired. At the VA. Wow, quite a history. And you mentioned Bob Johnson. Bob has a CU history here in Colorado. And I remember the day he came back and he said, we have made some progress in tinnitus, and none of us believed him. And so he proceeded to then tell us what was going on and demonstrate some things, and turned us into believers early on in the tinnitus journey. So well, let’s Can you briefly tell us a little bit about the learning health networks, Jeff, and how that can be of assistance to all of us that work and treat and people that do research and so on in tinnitus itself? Certainly, Bob. I think before we dig into that deeply, a couple of definitions need to be looked into. There’s learning health systems. People get those confused with learning health networks. We also have practice based research networks, too. Just briefly, a learning health system would be something like the Cleveland Clinic or the Mayo Clinic that has. It addresses a large number of disease conditions, and they all have their own quality improvement methodologies and techniques that are more or less central to that entire institution. PBRNs also address these disease conditions, but they focus typically on single disease conditions. Thats a distinction between a public, practice based research network and a learning health system. A learning health network is similar to a learning health system, but again, like a PBRN, it focuses on a single disease condition. In this case, we’re going to focus on tinnitus. But what learning health networks do with the PBRNs do nothing, is they apply quality improvement techniques and performance improvement techniques with a focus on outcomes rather than on basic research. And one of the things that I found when I first started to research the tinnitus world, much like any other health condition, that research is extremely siloed. And also clinical care is very much siloed, and clinical practice guidelines really aren’t followed very well. There’s very little discipline with respect to following the 2014 clinical practice guidelines that came out. And I am excited about the 2024 clinical Practice guidelines that came out recently by the VA and Department of Defense. But what learning health networks do is they create working communities where the focus is on three arms researchers, clinicians, and most importantly, the patient. So really, the voice of the patient is amplified quite a bit in a learning health network as opposed to a learning health system or a practice based research network. That’s one of the main takeaways. And, you know, patients really have a say in how they’re actually measured, how improvement is measured, how do they feel? You know, it’s not just about TFI scores or THI scores. It’s really quality of life measures and maybe how those, you know, audiometric measures roll up into quality of life measures. That’s a separate topic. I’m working on an intermediate level. Distinctions between TFI, THI And the questionnaires that we have today. But the bottom line is this. The focus is on the patient. It’s focusing on outcomes, and it’s focusing on the clinical care and the improvement of clinical care and the consistency of clinical care. There’s a whole number of learning health networks in place. Now, we can talk about that separately, but the bottom line is this research is no longer siloed. Clinical care is no longer siloed. The voice of the patient is amplified, and all three of those actors work together for better outcomes. So by Silo you mean that many of the people that are doing research are often not communicating with other disciplines to facilitate their research, with all the other disciplines that are going on? That may have some relevance to those things? That could be part of it. But even more so than that is they’re siloed with within the condition itself. I mean, siloed research within tinnitus. We have the tinnitus research initiative in Europe. We have the ATA. And both of those are great organizations. But how is the research shared? More importantly, how is it shared with patients, and what state do patients have in the research? The direction of research. Okay, so it’s not just the peripheral disciplines that may be involved, but it’s this organization and this organization and this organization all doing separate things and maybe not communicating among themselves as much as they really should. That’s right, yeah. So what organizations do you intend to work with to create this Tinnitus Learning Health Network, Jeff? Well first of all, we’re gracious that you’ve taken an interest in us and given us this platform today where we can get some messaging out and some education out in terms of what learning health networks are and how they can potentially help the tinnitus patients and suffers worldwide. But we’ve partnered with Cincinnati Children’s Hospital. As I mentioned, one of our board members, Doctor Donna Morris, she came from that organization. That’s the organization that developed learning health networks, and it’s right here in Cincinnati. The James Anderson research arm of Cincinnati children actually developed a framework. So I have strong relationships with all many of the key people in that organization. Were also working with the ATA. I’ve networked with the ATA since I started this journey in 2021. I’ve communicated with most of the people who sit on their scientific advisory committee, and, of course, I’ve met with senior management. So they’re all aware of what we’re trying to do, and they’ve indicated a willingness to help where they can, and I think that’s a great relationship that we need to continue. Also with Jim’s former organization, the NCRAR. You know, Jim has many contacts still there. I’ve reached out to a number of folks there, so I’m known within that organization, and some folks within that organization have, volunteer, are shown a willingness to. To assist us too, as we build this Tinnitus Learning Health network. We also have the tinnitus working group, which is kind of an outreach from the NCRAR. And the tinnitus working group encompasses both the VA and the Department of Defense, and they’re in the business of developing practice guidelines, I believe. And Jim, correct me if I’m wrong, that’s how PTM may have been disseminated in the first place, was through the tinnitus working group, or at least it might be partially managed now. So there’s a few. The hyperacusis research organization is another, because as we know, hyperacusis and misophonia are comorbid conditions to tinnitus. So they may help us with some screening up front, and they may eventually become a more active member of a tinnitus learning health network. We might potentially see long term emerging of this network with the work that the people are doing at HRO. And then again, we’ve reached out to many of VA and Department of Defense clinics, clinicians, I should say. And we’re going for those, some of the organizations for now, of course, building relationships as we go. Fabulous. And now. Now Jeff, will the tinnitus learning Health network address other auditory problems other than just tinnitus, or should it involve possibly hearing, as well as the hearing that’s related to tinnitus and maybe not only noise induced tinnitus, but toxic tinnitus and medication tinnitus and some of these other kinds of things that we know have influence on tinnitus and tinnitus treatment? Well, I would say the primary focus is on tinnitus. And. Jim, please chime in here. Were going to do some work with hyperacusis and misophonia because they’re related conditions. Were not going to be focused specifically on hearing. That’s too broad of a topic for us, if you will. The focus is going to be on tinnitus and we’ll have plenty to do there. Jim, any thoughts, to add to that? Yeah, these conditions are all interrelated, so people who have hearing loss also have tinnitus. They also have hyperacusis. So it’s pretty hard to just separate them out completely. And you’re asking about different causes of hearing loss. Whatever can cause hearing loss can also cause tinnitus. So I would think that in these networks of clinics, they would be doing medical histories with their patients to find out why they might have tinnitus. But it crosses over between tinnitus hearing loss and hyperacusis. Anything that can cause one, can cause the other. So it’s inevitable that there will be a lot of crossover and overlapping information. So now, as you guys develop the tinnitus learning health network will you be looking to establish some best practices some clinical training, some certification kinds of things? What kind of a look will the tinnitus learning health network offer? Jim you want to take that? So, as most of us know, there is no certification for being a tinnitus provider. Anyone can claim to be a tinnitus expert, and they’ll get, they can get away with it, and they can do literally anything and charge anything they want. And there’s really no oversight to ensure that they’re competent and that they are ethical providers. So I think that part of this whole endeavor is to create a model for how tinnitus services can be provided. And we have an idea for how to do that. It’s basically a stepped care framework. And we don’t want to dictate what each clinic or clinician does specifically with their patients, but we think that there should be a framework within which they provide their services. And we need to assess outcomes, and we need to provide information that is common across all the clinics. So we can pool that information and analyze it as if it was basically one clinic. But maybe looking at this clinic does. Does this, this clinic does this. These patients have these characteristics. These patients have these characteristics. And that’s the beauty of having a network of clinics like this is you can take the data from all those clinics and take it to one source or one resource that analyzes it all as if it was one big study. Okay. And so, and as most of us know, there’s been a AAA certification for a few years. That kind of was a little bit of a progressive kind of a thing for a time, but it’s but the training for that currently is pretty outdated. And the and we can certainly use some orientation and putting things together. I think that’s been one of the problems, hasn’t it, Jim, for such a long time is that, that, as Jeff mentioned, the silo idea where this research lab is doing this and, oh, this works, or this doesn’t work, and then another research lab does this and they kind of say, well, this works or that works, but nobody’s kind of really putting everything together, really, to kind of come up with things to move things forward. That’s well said, Bob. And I think the other thing to add is that that research is time boxed, too, whereas in a learning health network, it’s continuous improvement, so you can more quickly get evidence into practice. I mean, typically it takes 17 years for evidence to make it into clinical practice. With learning health networks, what we found is that that has been reduced on average to about three years. That’s huge. So are we going to assess patients in the same way we have been assessing them? Jim, you know, I know that there’s been some progress, from what I understand from some of my other colleagues that deal with tinnitus, is that there’s been some progress in some Australian research that might lead to objective measurement of tinnitus. But generally, do we see our patients being assessed in the same manner five years from now as they are today. Right. So right now we rely on patient report as to whether they have tinnitus or not. Now, a lot of people claim to have tinnitus, but they have ear noise. They have temporary transient ear noise and they claim to have tinnitus. So it starts with, does a person really have tinnitus or nothing? Is it a pathological condition or did they just go to a rock concert and they’ve got ringing in their ears for a couple of days? Those types of things. So that’s part of the initial assessment. Now there may be an objective test in the future. Does a person have tinnitus or not? They can be hooked up to electrodes and say yes they do or no they don’t. Thats probably something that’ll happen in the future, but I don’t think we can depend on that. I think right now we just have to, to do the best we can based on patient report. And then the next thing is, is there tinnitus bothersome or not? Is it impacting their life in some way? And in the great majority of cases it really isn’t. It may be just a minor bother, but it’s not really significantly impacting their life. So if it is significantly impacting their life, that’s when they need clinical services. But frankly, if anyone has tinnitus, they need to have their hearing evaluated because they also probably have hearing loss. So those are some key issues with just basic assessment that all clinics should be doing. And maybe to add to that, Jim, is that even if there is an objective assessment, Jeff’s telling us that it might take 17 years before that makes it into the clinics where we can really all use it each and every day. So anyway, well now, later we’re going to be assessing the outcomes. And my understanding is, at least from where I’ve been the various treatments that we do we do an initial self report and then we do a treatment and then we get a post self report as well. Thats probably about where we are with the treatment programs at this point in time, isn’t it? Yeah. So you’re talking about outcomes assessment. If we do provide services, any level of services, how effective are those services? And there are lots of questionnaires available and they’ve all been validated for at least intake assessment. A couple of them have been validated for outcome assessment. So I think clinics need to be aware of what questionnaires there are. And ideally they would all use the same questionnaire so we can directly compare outcomes between clinics. Great. And I might add to that that outcome measurement is extremely important in learning health networks. That really is the focus. You know, we’re relying on research to provide better interventions. But the focus in a learning health network is on outcomes, measuring outcomes. And a big part of that is the outcomes are designed by the network itself, where you get clinicians, researchers and patients together to actually define new outcome measures. So we would be using the TFI, the THI, but we will also be defining new outcome measurements that are more probably related to quality of life. Well, and there’s a questionnaire or two or pen whatever that relate the impact of tinnitus on quality of life and so on. I still remember the day when I was seeing tinnitus patients at Colorado State and in the early 80s in a tinnitus clinic that we had begun there. And the chairman kept saying, listen, you’re spending way too many, too much time with all these people, and most of them are nuts anyway. But we felt that there was a real reason and it was an up and coming component of audiology practice. And now I think we have reached a point where it has become a component of audiology practice. But now it seems that something like the tinnitus learning health network would be a proper mode by which we can focus and find out what’s going on with each and every patient and come up with some good clinical possibilities for treatment of these individuals. So do you guys have some final kinds of comments for us in our discussion for this particular episode? Sure. I would like to add that really, nowadays data is really not collected very well in the tinnitus clinical setting. There is data that’s collected, but it’s non standardized and it’s not shared. So in a tinnitus learning network, not only are we going to have interaction between patients, researchers and clinicians at a human level and we have our own interaction model, but we’re going to be sharing data and that’s not really being done today. So a big takeaway here is we’ll be collecting lots of data. Of course, HIPAA will be involved and this will be all anonymized, as it should be. But that’s one of the things that we’re going to be doing. And I really believe that if we get enough key opinion leaders and enough clinicians and patients who understand this idea that we’re going to be able to stand up a small network sometime next year. We have applied for a PCORI grant that actually we just created, sent the letter of intent out if we’re invited back for the full application. That’ll happen later this year. If we get that grant, that’s going to be helpful for next summer because it’s really about patient centered comparative effectiveness research, which dovetails precisely into what a learning health network is. So we’re excited about what may happen next summer with respect to PCORI. But in between now and then, we’re going to be holding focus group sessions with key opinion leaders, patients and clinicians and researchers, and basically three cohorts the private sector with academic institutions and for military people. That’s really divided into two separate cultures, as I’ve recently learned, the VA and the Department of Defense. So we’ll likely would potentially have three focus group sessions where we kind of define the network at a high level with all the key stakeholders. Then going into next year, we’ll actually be recruiting the institutions from which many of these people come, because you really can’t recruit an institution unless you have buy in from the constituents, whether that’s a patient, a clinician, or a researcher, before you can ever go to the management of an institution. So that’s kind of where we’re headed in early next year, is to recruit more audiologists, more clinicians, subject matter experts, and then also the institutions themselves. Well I hope that you and Dr. Henry will keep us informed here at This Week in Hearing as to the progress. And it’d be my pleasure to host further episodes that monitor the progress of this tinnitus learning health network. Today my guests have been Jeff Reagan from Stop The Ring, by the way, you can go to stopthering.org and interact with Mr Reagan as necessary. And also I’m honored to have Dr Jim Henry with us today who, by the way, is the author of three books on tinnitus, in addition to his extensive background as a tinnitus researcher for virtually all of his career. And the first book is called ‘Ears Gone Wrong’. I’m sorry. And the second book is on tinnitus retraining therapy. Then the third book is on progressive tinnitus management. These books are actually designed for not only clinicians, but also peripheral professionals. So we can maybe move out of that silo that that Jeff was talking about a little while ago. And these would be ENTs and other physicians, as well as other professionals in total different areas. We also, as we know, use a lot of cognitive behavioral therapy. So they’re for psychology people also. And they can be obtained through Amazon.com dot. I really appreciate the fact that you have included this week in hearing to do your announcement of the tinnitus learning health network. Guys And please keep us informed as to how the progress is going. So today my guest has been Jeff Reagan from stop the ring, and I’m honored to have Dr Jim Henry with us from earsgonewrong.com. thanks for being with us and all of you out there, thanks for putting up with us here at This Week in Hearing.