A Conversation with Dr. Sarah Sydlowski!

Join me for a conversation with Dr. Sarah Sydlowski as we dig deeper into why cochlear implants are NOT the last resort for patients with the expanding criteria. In this conversation, we discuss the current referral guideline and walk through a case study to help dispel some of the common misconceptions about referrals.  Dr. Sarah Sydlowski, AuD, PhD, MBA, ABA Certified, CISC, is the Audiology Director of the Hearing Implant Program, Audiology Innovation, and Strategic Partnerships Director, and Associate Chief Improvement Officer at the Cleveland Clinic in Cleveland, Ohio.  Her clinical and research interests include implantable hearing devices, optimization of practice efficiency, and developing innovative clinical delivery models.  Dr. Sydlowski is the past president of the American Academy of Audiology and the Ohio Academy of Audiology.  She has also served on many other boards and taskforce for AAA and the American Cochlear Implant Alliance.  She is currently the co-chair of the newly formed Hearing Health Collaborative charged with developing a blueprint for changing the landscape of hearing healthcare.  

To reach out to Dr. Sydlowski you can email at sydlows@ccf.org

For more information about the Hearing Health Collaborative:  https://adulthearing.com/hearing-health-collaborative/

You can listen to this episode wherever you stream podcasts and at www.3cdigitalmedianetwork.com/empowear-audiology-podcast

For more information about Dr. Carrie Spangler- check out her Linktree at https://linktr.ee/carrie.spangler.

For transcripts of this episode- visit the podcast website at: https://empowearaudiology.buzzsprout.com

Transcript

Announcer: [00:00:00] Welcome to episode 57 of empowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have the honor to have a special guest today on the Ear Audiology podcast, and I have Dr. Sarah Sydlowski and she is the audiologist audiology director of the Hearing Implant Program, the director of Audiology, Innovation and Strategic Partnerships and Associate Chief Improvement Officer at the Cleveland Clinic in Cleveland, Ohio, where her clinical and research interests focus on implantable hearing devices. Optimization of practice efficiency while maintaining strong outcomes and development of innovative clinical delivery models. She earned. She has earned the Cleveland Clinic Distinguished Educator Certificate and is the adjunct faculty at the University of Akron, where she teaches the Graduate Implantable Technologies Course. Dr. Sydlowski completed her clinical doctorate at the University of Louisville, her externship at Mayo Clinic in Arizona, and her PhD at Gallaudet University. Most recently, she completed her executive MBA at the Weatherhead School of Management at Case Western Reserve University, where she was the recipient of the MBA Leadership Award.

Carrie: [00:01:57] Dr. Sydlowski has been a very active and professional organization serving on the American Academy of Audiology Board of Directors as a member at large and President during the 2021 2022 term, as well as on multiple program committees and subcommittees for the National Conference. As a trustee of the AAA Foundation and as Chair of the Governance Audit and Student Academy of Audiology Advisory Committees. She is the past president of the Ohio Academy of Audiology and has served on a task force for the American Cochlear Implant Alliance related to expanding cochlear implant candidacy and was co-chair of the American Cochlear Implant Alliance Program Committee in 2021. Most recently, her interests have focused on developing interdisciplinary relationships to advance the successful identification and management of individuals with hearing loss through. As co-chair of the newly formed Hearing Health Collaborative, which is a think tank of audiologist, otologist and patient advocates charged with developing a blueprint for changing the landscape of hearing health care. She is also principal investigator of a study focused on integration of tablet based hearing screeners in primary care and geriatric medicine practices. So again, I am really excited to have Dr. Sarah Sydlowski i with me today. Thank you for being a guest on the EmpowEAR Audiology podcast.

Sarah: [00:03:29] Oh my gosh. I was so excited to have the invitation. Thanks for having.

Carrie: [00:03:32] Me. Well, I am really excited to have a conversation with you about a couple of topics that I feel passionately about, and I know you do as well. But whenever I have an audiologist on my podcast, I really like to find out how did you even get into the field of audiology? Because I feel everybody has a different story that led them there.

Sarah: [00:03:55] That's very true. You know, mine was kind of a long and meandering path. I always knew that I wanted to work in health care. I knew that I wanted to help people. I was always really good at writing and I loved communication. I thought I wanted to be a journalism major. For a while. I thought that I would be a writer, um, but I wanted to somehow combine these two loves that I have. And for some reason initially I thought that meant that I should be an orthodontist. I come from a family of dentists, and so I originally thought that's what I would do. So I was pre-dental for most of college. And then I have a grandfather who got a cochlear implant when I was in graduate school, and I don't know that his hearing loss directly impacted me, but I think it must have had some role at least. And somehow I stumbled onto audiology and I came to the conclusion that audiology was a fairly small field and that there was more opportunity to have a bigger impact. And so I decided to be an audiologist. And actually when I first started in graduate school, I almost went back to dental school because in my first semester I thought, I don't know if this is for me. It was initially, you know, audiograms and hearing aids and I just wasn't sure. And my program director at the time told me that there Is so much more to audiology, you need to stick it out and find the thing that inspires you and challenges you. And there are so many things that you can do. You don't have to do any one thing. And that was really true. And for me, cochlear implants was the love that I found in audiology.

Carrie: [00:05:31] Love that story. How just something in your family kind of clicked and got you on another path. And obviously you've made a huge impact in the field of audiology and you continue to do so with your passion and what you love to do. So thank you for all that you've done. I am excited to really dig into a couple of topics today with you one being cochlear implants, which we both share a passion for me personally and you professionally. And then to dig in a little bit more with the Hearing Health Collaborative and the impact that is making nationally and then internationally as well. But just to kind of get started with cochlear implants, and I know most of our audience today probably knows what a cochlear implant is, but can you just kind of give a quick overview of what a cochlear implant is just in case somebody wants to know or have a little background about that?

Sarah: [00:06:34] Sure. So my simple explanation of a cochlear implant is that for hearing aids, we're assuming that the ear is still working the way that it typically does. And if we can just make sounds louder, then they're more accessible and can be passed up to the brain the way that we would expect. But sometimes it's not enough just to make sounds louder. We also need to make them a bit clearer. And so a cochlear implant essentially takes the place of the sensory cells in the inner ear that aren't working the way that they used to. And we directly stimulate the hearing nerve and send the signal up to the brain.

Carrie: [00:07:10] Good. Thank you for having that quick overview. And with cochlear implants, they've been around for quite a few years, really kind of starting out with that FDA approval back in the 1980s and then kind of early 90s for kids. But there's been quite a few changes over the years and technology technique techniques, candidacies and outcomes. So can you kind of maybe give an overview of how this candidacy has changed over the years?

Sarah: [00:07:42] Sure. Absolutely. I think it's so exciting actually, how much cochlear implants have changed in my career. It's one of the reasons I love it is that year to year you have to keep learning and doing things differently because it's constantly evolving. Initially, cochlear implants were a last resort. They were saved for when a hearing aid could not help at all and somebody was really struggling and just couldn't function with the hearing aid even. And today we know that the sooner that we offer a cochlear implant, the sooner someone has access to that technology, the better. So today we don't look at the overall hearing as much as we look at each ear individually to try to make sure that each year is functioning the best it possibly can. We also tend to use words more than sentences, So we realize that when you have context, sure, you can maybe figure out what's being said, but you're using so much cognitive energy that you might be really tired and exhausted by the end of the day. And so it's more realistic to look at individual words where you're not having to draw on those cognitive resources and can hear the individual sounds. And then the last thing I'd say is that we don't have concerns like we used to have about when someone has residual hearing. So even if they have natural hearing, that's maybe within the normal range or a mild hearing loss, particularly in the low pitches, will still offer an implant because we know not only can we preserve it and not necessarily lose it, but it can add to the quality and the overall outcomes that the patient has, especially in situations like groups and background noise or enjoying music.

Carrie: [00:09:28] Yeah. So I feel like, um, you mentioned earlier that early cochlear implants were a last resort and with a lot of the changes in the candidacy and having more residual hearing and kind of measuring different ears, that has changed a lot. But I feel like maybe hearing health care professionals in general who are not working directly with the Cochlear Implant Center, they may not know that there been changes in that. So can you maybe update a little bit about some of those next steps that if somebody was working in a clinic that they may be looking for?

Sarah: [00:10:13] So I'll give you a really simple and easy way to know if you should send someone for a cochlear implant evaluation. And this is what we use at the Cleveland Clinic, and that is if someone has an ear, any one ear, that's understanding less than 60% of words, we'd like to see them. And we did a project probably seven years ago now because we had seen that the candidacy criteria were changing. We knew we were offering implants to many more people, but we weren't seeing more people coming into our practice and we couldn't figure out why. And so we went through a program that we have here at the clinic for our continuous improvement department. We use some structured problem solving to ask why that was happening. And one of the things that we learned is that people felt like they were sending someone for a cochlear implant, not a cochlear implant evaluation. And those are very different. So I would want referring providers, audiologists in the community who don't work with cochlear implants to know that when you tell someone they should consider a cochlear implant, it doesn't mean that they absolutely have to get one.

Sarah: [00:11:25] I know that can feel nerve wracking to make that recommendation often, but I look at it more like a hearing aid benefit appointment, so we're able to measure how much is this individual understanding with their hearing aids? What's the best hearing aids can do for them? And if the answer is it's not as much as what a cochlear implant can do, then we should talk about a cochlear implant. But oftentimes what we learn in that appointment is that there's programing adjustments that could happen for their hearing aid, or maybe they need to be using assistive listening devices. It's really an opportunity just to better understand what are they experiencing right now, what's the best that they can do? And maybe cochlear implants are part of that conversation. So, you know, I just hope that people aren't nervous to send someone. And I think it's important to know you're not recommending the surgery you're recommending. Let's look at all your options and making sure you're doing the best you can.

Carrie: [00:12:22] Yeah. And I'm sure from a patient perspective, I know it's a scary thing to do. And but then in hindsight, like getting that extra information and being able to process it may help you later make a decision for that is better for your hearing health care as well.

Sarah: [00:12:42] Yes, absolutely. Absolutely.

Carrie: [00:12:45] Are there other barriers that you have seen as a cochlear implant audiologist and being at the Cleveland Clinic of whether it's from the audiologist, not referring or patients not coming as far as a cochlear implant? Just even the evaluation goes?

Sarah: [00:13:05] That's a great question. I don't think that we really know all of the reasons yet. I do think that referring providers, whether that's an audiologist or an ENT or even a primary care provider, it's really important that they feel confident and comfortable making that recommendation because I think patients look to you, you know, to provide the best recommendation possible and they trust what you offer. I think it's typical and normal for people to want to dig to the bottom of their toolkit to offer whatever they can. And so we see that happen a lot, that we'll have patients come in who have tried 5 or 6 different sets of hearing aids. And the thing about that that's really interesting is often from patients I hear the comment, why didn't my audiologist tell me about this sooner? And they're frustrated and they've even lost some trust. And so I think that being open and candid about having these conversations early actually helps to build your patients’ confidence in working with you, knowing that you have their best interests at heart. So definitely that's an important piece of it. I also think there are a lot of misconceptions about the surgery itself. I've heard people say it's brain surgery. I've heard people believe you have to stay in the hospital, you know, for a number of days.

Sarah: [00:14:28] This is an outpatient procedure. It's not actually anywhere close to the brain as far as Otology surgeries go. It's fairly straightforward. We see very low complications. There are always risks to surgery, of course, but I think that there are some misconceptions about how invasive the procedure really is or what the recovery is like. Certainly, there's some risk for dizziness, sometimes an increase in tinnitus, sometimes a metallic taste. There's a few other things that patients should be aware of, but for the most part, we see these as pretty low occurrences. So that probably factors in as well. And then I think what you mentioned, which is just a fear of the unknown. Cochlear implants are hard to talk about because you can't let someone try one and see, Oh, is it better? And so it's really a leap of faith and trusting in your providers. When we say we're pretty confident that you're going to do better with this device than you can with the hearing aid, but there's no going back. And so I think that it that can be a hard a hard decision to make and people often have to feel like. There at the end of their rope before they're ready to let go.

Carrie: [00:15:45] Yeah, no, I can relate well to that. I think one of my the best things that helped me was being able to talk to other cochlear implant recipients as well who have gone through the process and they were able to share some of those similar concerns. But then you see that they're they most of the time people say, I wish I would have done this sooner rather than waited. So that kind of been the the answer that I get most of the time.

Sarah: [00:16:13] That's I'm so glad you said that, because that is the most common thing I hear is why didn't I do this sooner? And actually, one of my favorite parts of my job is that when I see patients for cochlear implant evaluation, they're usually thinking there's nothing else I can do. I've tried everything and I feel like I have this little secret, like I have this great answer and I know what your experience is going to be like in six months from now and your life is going to open up. And so it's just such an honor really to be able to provide that for the patients I work with.

Carrie: [00:16:50] Yeah, just getting them to that that appointment so they can have their eyes opened or at least learn more about what their options are and be able to make a decision at some point. What is the, I guess, percentage of individuals who may qualify for a cochlear implant but have not taken that step?

Sarah: [00:17:13] A great question. So I know that the number is low, but I was shocked to read a recent article that was published, I think just in the last year by Ashley Nasiri, who was up at Mayo at the time, and some of her colleagues, and they looked at very current numbers for cochlear implant candidates as well as who could benefit but hadn't proceeded. And they estimated that for those who meet, the more expanded criteria, only 2% of people who could benefit from an implant have one, which means 98% of people who could be doing so much better with their hearing and enjoying life and being able to do things they care about don't have one. So that's why I'm so committed to trying to work hard to spread the message that many, many more people could be candidates and they just need to get to a cochlear implant program.

Carrie: [00:18:10] Wow. To think that 98% have not taken or even explored it yet is quite alarming. I guess.

Sarah: [00:18:20] It's unbelievable. Like how many, you know, medical interventions do we have where 98% of people who could benefit from it don't have it, don't actually know the answer to that question, But I can't imagine it's many. And it just seems amazing that we have such wonderful technology. And then to not use it is such a shame.

Carrie: [00:18:40] Yeah. So we definitely have a lot of work to do on both sides. I know you had just was back in, I think, 2022 September, October of 2022. You had an article that you authored in Audiology today titled Cochlear Implantation The Most Misunderstood and under Recommended Treatment Option in Audiology. And I think we kind of covered that. But do you want to maybe summarize that answer? Because it it definitely the most misunderstood and underutilized.

Sarah: [00:19:18] But I hope that title would catch people's attention. Yeah. So basically what I wrote about are some of the things that we talked about today too, which is the idea that we're looking at individual ears and residual hearing is okay. And there are many people that you probably wouldn't look at and think of them as a cochlear implant candidate. Most of us have in our mind the idea that someone has to have severe to profound hearing in both ears, and then they could be a cochlear implant candidate. But most of my practice anymore, that's actually a pretty small percentage of who we see. I would say the majority of our patients now have asymmetric hearing loss where one ear may very well be outside of the typical range for a cochlear implant. Many of our candidates now have completely normal hearing and at least one ear. And the other thing that I wrote about in the article is that oftentimes, very often, actually, people think of who is a candidate for a cochlear implant based on if they meet FDA labeling or if their insurance would cover it. And the reality is that clinically, we are implanting many individuals who exceed FDA labeling. And there's a difference between candidacy and coverage, and we use that term interchangeably.

Sarah: [00:20:44] And I think it's very dangerous and harmful, actually. So we've made a really big effort at our program to first say, is this individual a candidate? So would they would they benefit from a cochlear implant? Could their hearing be improved by having a cochlear implant, yes or no? And then we'll answer the question, will someone pay for it? Which is a totally separate issue. As you know, cochlear implants are covered by most insurances, but oftentimes their policies are still fairly outdated and they tend to list those older criteria. But oftentimes we're able to go through appeals and we're able to convince them that based on this particular circumstance, the patient would benefit. And so I think being able to deal with those two issues separately is really important because we've seen many patients in the past and from other programs who are told you're not a candidate for a cochlear implant, but really they are a candidate. They could benefit. Either their insurance won't pay for it or the clinician who saw them didn't, or they knew that they didn't meet FDA labeling or Medicare criteria, which is a totally different issue.

Carrie: [00:21:55] Yeah, no, that's good to kind of clarify that difference between candidacy and coverage. And I think you're right, a lot of people get confused. They just say, I'm not a candidate. But in reality, they are. They just may not have been approved or they didn't go through the right channels then.

Sarah: [00:22:14] Right And I think it's important for patients to know the difference because we need we need them to be advocating to if they're telling people, oh, wasn't a candidate, that's very different than I am a candidate. And can you believe my insurance won't cover it? This is ridiculous. And I think that we need, you know, people to have that frustration and be able to share their stories so that we can continue to move the needle.

Carrie: [00:22:40] Yeah. Which I think is a great segue . In that article that you wrote, you presented a case scenario and it is kind of the I don't want to say untraditional, but like the a case scenario that maybe people would not have referred for. So I thought just for our listeners, it might be beneficial if I read your case scenario and then you kind of walk through for our listeners what those next steps might be so that we can kind of dispel some of these myths of not referring along the way for a candidate that they might not have thought would have been worthy of referring, I guess. So your scenario talks about a 61 year old female that has adult onset progressive sensorineural hearing loss attributed to an auto immune disease. Her audiogram, which you can't see right now. But if you just want to picture it as a listener, suggest a moderately severe sensorineural hearing loss from 750 to 8000Hz with poor word recognition ability. She wears hearing aids in both ears, but reports that she is increasingly frustrated and has difficulty in a variety of situations. She's anxious and groups and crowds and is withdrawing from public speaking engagements that have always been a key aspect of her work because she feels uncertain fielding questions from the crowd. So if someone came in to a practice with this kind of setup, what would be the next steps for digging deeper?

Sarah: [00:24:22] Yeah, a great question. So I think an important question that we don't ask and answer often enough in a typical audiology appointment is how much are your hearing aids helping you? So we program the hearing aids. Some audiologist is programmed to first fit and may not do objective testing. There's lots of conversation about how important real ear measures are. And I of course 100% agree with that. But it's important to remember that real ear measures are really just showing us the output of the hearing aid and what the hearing aid should be able to provide as far as audibility. But I believe we need to take it one step further on a regular basis and do aided speech recognition testing with all of our hearing aid recipients. We tend to think of that as part of a cochlear implant evaluation, and it is it's an important part. But don't think that we should be waiting until we think someone's an implant candidate to do that testing. So for this patient in particular, she didn't have, I don't think any thresholds that were worse than 65 DB No.

Carrie: [00:25:31] 75 at 8000 for the right ear. But that was it.

Sarah: [00:25:35] That was it. Yeah. So most people, you know, especially with those good low frequencies up in the mild range at 250 and 500, most people would look at that and say it's a hearing aid patient. And she was. But she was also still struggling with those hearing aids. My recommendation would be that any audiologist, every audiologist, even if you don't work with cochlear implants, should put that patient in the booth and measure their ability to understand spoken words with those hearing aids on programmed and verified. And if the word understanding is worse than 50%. Consider them for a potential cochlear implant.

Carrie: [00:26:21] Yeah. And it looks like for this case, when they put her in the booth, the right ear best aided was 40% for words and the left ear was 36%. But can you expand a little bit more on maybe sentences too? You've touched on it earlier, but she had 72% in one ear, 74% in the other ear in quiet. And that obviously went down in noise. But people might look at the sentences and be like, wow, she's getting she's pretty good.

Carrie: [00:26:52] Yes, that's exactly right.

Sarah: [00:26:53] Most people would look at sentences and, you know, in a in a day to day conversation, especially if she's in quiet and especially if she has lip reading, it might appear that she's doing reasonably well. But what we don't measure well, we don't necessarily even ask about well, is how hard it is for her to do that. And so the listening effort that she's putting in and the cognitive resources she's having to dedicate to getting that 72% is probably pretty significant, especially when you look at the fact that if you do take context away and now you're just hearing individual words, her scores drop almost in half. And so that alone can tell you that, you know, she's relying very heavily on contextual information. So if we look at just that word understanding on its own and it's, you know, 30, 40%, that means that there are many sounds of speech that she's not hearing, that a hearing aid simply can't provide, that a cochlear implant could. And indeed, that's what we saw when we moved her forward to a cochlear implant.

Carrie: [00:28:00] Right.

Carrie: [00:28:01] And then you went even further with her and talked about more of those subjective experiences too. So can you share just a little bit more maybe for audiologists and clinics of different tools that they might want to incorporate to get that information?

Sarah: [00:28:23] Definitely. I think that's probably also a fairly overlooked aspect. Most of us ask informally, you know, how do you feel like you're doing in different situations, But having a more standardized questionnaire that patients can complete, I think gives really great information about what they're experiencing and what they're perceiving in a way that's measurable and something that you can compare, you know, pre and post when you've made some changes. So for our patient, we use well, really for all of our cochlear implant evaluations, we use the hearing handicap inventory for adults or the elderly, depending on the age of the individual, a tinnitus handicap inventory, dizziness, handicap inventory. And then we also usually use the SSQ, the speech Spatial Qualities questionnaire. And the combination of those measures give us a good sense of how the individual is perceiving they're doing in their day to day life. There are a lot of other measures, of course, that can be very helpful. I think it's important to consider, number one, what questions are you trying to answer? And number two, when are you using those questionnaires? Is it before and after an intervention? Is it something else? But for us, you know, we were able to see that her hearing handicap was 100, which is as high as it can go. And so that was very helpful in understanding really the impact the hearing loss was having, even though I would guess that you'd look at that audiogram that you described so well and you'd probably wouldn't think that was a 100 HHI score. So it was important to have that additional information about her experience.

Carrie: [00:30:05] And with all of this information, she. You talked a lot about earlier, those looking at your specific, you know, the ears differently and then that residual hearing and taking all of that together, what was the next step in almost, I guess I'll say, the counseling process of getting her to, um, maybe think about a cochlear implant.

Sarah: [00:30:35] A great question. Oftentimes, if someone makes it to my office, they already are struggling enough that they want to know about any options that are available to them. So remember, there wasn't a whole lot of counseling that really needed to happen. I actually can distinctly remember, she said. I don't care if you want to put reindeer antlers on my head, I will do it because I want to hear better. Wow. So that in and of itself was really impactful. Sometimes I think people come in and they're skeptical, in part because they've already been told in the past, you know, let's get a new hearing aid that will help you. And oftentimes it doesn't help as much as they want it to be able to help. And it's not because their audiologist hasn't done the best job that they could. It's not because it's not good technology. It's just because their hearing has exceeded the capability of acoustic technology. And so it's important that they're able to move forward. So sometimes the counseling is overcoming their past experiences and helping them understand why this time is going to be different. And that goes back to what I mentioned earlier. You know, sometimes when audiologists have tried three or 4 or 5 sets of hearing aids, it actually makes it even harder for patients to move forward to the next step because they've been burned so many times. And so they are more skeptical and they are less trusting. And so I think the patients who get to me sooner who get to have the conversation earlier, it's also easier.

Carrie: [00:32:17] And just to have a kind of wrap up of the case scenario, what was so she went through with the cochlear implant and what happened after that.

Sarah: [00:32:29] So she did great. That's that's a happy ending. But the biggest improvement we saw was, in her word, understanding ability, which is exactly what we expected, that in those situations where context goes away. Her word scores doubled. She was implanted in an ear that had 36% word recognition, and it went up to 84%. And then the great thing is that she still wore a hearing aid on the other side. And so she had the benefit of acoustic hearing there and put together her word understanding was 96%. Take it. A whole lot better than that. Noise, of course, was still difficult, which it is for all of us, especially when you have a hearing loss with the cochlear implant by itself, she was able to understand 46% in noise. But with the addition of the cochlear implant, which she had both cochlear implant and hearing aid together, her understanding was 82%, which before the implant she was only getting 26% in noise. So that was a huge, huge improvement.

Carrie: [00:33:35] And did she do any kind of like aural rehab or any training in order to kind of have that bimodal benefit?

Carrie: [00:33:43] Yes.

Sarah: [00:33:43] I'm so glad you asked that question, because I think when we talk about hearing devices, everybody thinks the magic is in the device. And partly it is, but partly it's in that work that the patient puts in. So we push auditory training really heavily here for everybody. But I have also seen this is just anecdotally the patients who have more residual hearing, especially like a single sided deaf patient who has a normal ear and then a cochlear implant ear. They have to be absolutely committed to doing this practice on a regular basis. So I tell everybody at least an hour a day, at least five days a week for at least the first six months after their cochlear implant and probably periodically forever. The more they do, the better outcomes we see for sure.

Carrie: [00:34:30] Yeah, I just wanted people to be aware that, like, the cochlear implant is not a quick fix and there's definitely some work that needs to be done after that too. But I also think it was telling with the questionnaire to post implant like even one month post implant when you re-administered the hearing handicap inventory.

Carrie: [00:34:53] Yes. Yeah.

Sarah: [00:34:54] Her her HHI score dropped from 100 to 22 in 1 month. I think that's also a misconception is that you're absolutely right. Like there's going to be months of work that goes into getting the most out of the implant that you can, but also within a couple of weeks, most people are doing better than where they started. And we measure everybody's hearing and understanding ability one month after we turn the implant on. And, you know, I won't say universally, but the vast majority of people are already demonstrating benefit just one month later. So many people think it'll be months and months before they have any improvement, which is definitely not the case.

Carrie: [00:35:36] Wow. Well, that was just a great way to highlight, I think, all of the different changes that have happened in candidacy and how hearing health care professionals really need to be thinking differently about their patients so that they can get the best benefit that they need, which I wanted to also talk about the other project that you are involved in too, called the Hearing Health Collaborative, because it really looks at hearing health care in a in a different way. Would you be able to share a little bit about your involvement with that? Because I know you were a part of the brainchild of developing it and really starting and getting this group going.

Sarah: [00:36:22] Sure. No thank you for asking. I'm really proud of this group and very honored to be involved and had the privilege of participating from the early days, which is great. So I co-chair the Hearing Health Collaborative with Dr. Matt Carlson, who's a neurologist at Mayo Clinic. And gosh, I've even lost count of how many members we have now because it's been growing so much. But I would estimate we probably have 40 or 50 people from across the country neurotologists, audiologists, representatives from our professional associations, some epidemiologists, primary care providers, geriatricians. It's a wonderful group of of people. And the purpose of the collaborative is really to get everybody at one table, you know, to try to cut through some of the bureaucracy. That can happen when we're looking at individual organizations or individual programs. We all want the same thing. And we know that there's power in all working together. So that's our intention. We've really become a think tank of people who are trying to move forward. How we manage hearing and hearing care in America. What we did that I'm particularly proud of is that we used structured problem solving approaches from continuous improvement. It's called A3 thinking to really understand the root cause of the problem that we're dealing with. And you mentioned earlier, you know, part of my time I spend now in our continuous improvement program, which is something that came to my career just recently, really in the last few years, but it has been so empowering to see the impact that using this methodology can have and the change that it can drive and the really strong results that we can have.

Sarah: [00:38:15] And so I was excited that the group embraced this methodology. I think one of the challenges that we've had with hearing care is we all make a lot of assumptions about why people aren't using hearing devices or why people aren't seeking our services. But to my knowledge, I don't know that anybody's really sat down and and gone through this structured problem solving to get to the root cause. So that's what we're doing with the collaborative. And through that process we identified three key countermeasures that we are focused on. The first is to identify a vital sign for hearing. We believe that there needs to be a number that people can look to, just like we do for blood pressure, knowing 120 over 80 abnormal or vision 2020, we don't have something comparable for hearing. Secondly, we know that we need to have a staging system for hearing loss. Right now, you know, we really focus on that scale of mild, moderate, moderately severe, etc. Number one, that doesn't have much meaning for patients or for referring providers. And number two, it only encompasses audibility, which is one component of hearing, but it doesn't factor in word recognition ability.

Sarah: [00:39:30] Be like we just talked about, which is so important, or quality of life or the perception the patient has. And so we would like to develop a staging system that really provides more understanding and direction to patients and to to referring providers. And then thirdly, we need to have procedural changes so that there's a better standard of care for getting patients into the system. That probably has a couple of components. One being at a primary care level or even a self screening level. You know, how is screening happening? When is it happening? Why is it happening? Should it be happening more? And then when you've been screened, what's the recommendation to get to an audiologist? And then secondly, once you're in the system, how do you get moved along to the right treatment? So like we've been talking about already today, once you have hearing aids, how do you make it to cochlear implants as an example? Or maybe you've tried over-the-counter hearing aids, but you need to move to prescription hearing aids. So we're looking at each of those steps in the path and really taking a long, thoughtful look. And most importantly, like I said, bringing together as many stakeholders as we can so that we can make the change together.

Carrie: [00:40:47] What a great. Start up a collaborative as well. And if individuals want to participate or get involved, are they able to?

Carrie: [00:40:59]

Sarah: [00:41:00]   Yes, absolutely. So we have a website you can Google Hearing Health collaborative, adult hearing. I think we'll bring it up. And there's information there about the work that we've done, how you can get involved. We're trying to update it as we continue to make progress because that work is is happening. We're also working on a few publications, so hopefully you'll be able to see those in the literature soon.

Carrie: [00:41:24] Great.

Carrie: [00:41:24] And I know part of that work is also kind of been with the awareness of cochlear implants as well. And there's an actual work group kind of looking at that as some of the challenges that we even talked about today and how to dispel some of those challenges.

Carrie: [00:41:44] 

Sarah: [00:41:45]   Yes. Yes.. So I think there's so many people who are contributing to this work, and we need as many people as possible who can because there's so much to be done. So there's everything I just described that's more, you know, at a primary care level, going to the public, you know, really specifically about hearing health. And then there's individuals who are more focused on that cochlear implant awareness, which we also need. And yes, I mean, just a lot a lot of work that's happening for sure.

Carrie: [00:42:18] Yeah, it's just wonderful that you have so many different professionals and individuals involved. And like you said, everybody has a seat at the table and everybody's perspective is so important in getting that mission out there to help the general public.

Sarah: [00:42:34] Yes, 100%. We we haven't done it individually yet, but together I think we can.

Carrie: [00:42:40] Great.

Carrie: [00:42:41] Well, Sarah, is there anything that I didn't ask you today that you think I should have asked you that our listeners should know about whether it's the cochlear implant process for adults particularly, or the Hearing Health Collaborative?

Sarah: [00:42:56] No. Gosh, I think you've done a great job of really covering it so well. And I've enjoyed tremendously being able to talk about something that I care about so much. I really appreciate you also being committed to getting the word out that, you know, just don't wait for cochlear implants. It's not a last resort. And please, you know, for your listeners, I hope everyone will contribute to that message of the fact that hearing is vital to health. It's about so much more than just a device. And I think that that's where, you know, the Hearing Health Collaborative and others are working hard to spread that message. But again, we need everybody individually in every venue that you have to share that message.

Carrie: [00:43:39] Yeah, that's a great way to kind of wrap everything together. Dr. Sydlowsk if people listeners want to get Ahold of you, is there a good way for them to reach out to you?

Sarah: [00:43:51] Sure, absolutely. They can email me. My email is s like Sam y d as in David l o w s like Sam at Charlie. Charlie frank.org.

Carrie: [00:44:05] Okay. And I can put that link in the show notes as well, as well as a link to the Hearing Health collaborative too. So if people want to link on that, they would have a direct access to that. But I just want to thank you for taking the time. I know you from the bio. You have a lot of different projects and interest and passion going on, but I wanted to thank you for being an honored guest today on the empowEAR Audiology podcast and highlighting all of your passion and the work that you're doing for hearing health care and policy change and for cochlear implants in general. So thank you for all of that. And I just want to thank all of the listeners for being a part of the empowEAR Audiology Podcast. Be sure to subscribe wherever you listen to ensure that you don't miss an episode, and I would be grateful if you could leave a five star review which helps others who may not have subscribed yet know about the empowEAR Audiology Podcast and if you need transcripts, they are available on the 3C Digital Media Network webpage. So thanks again for being a guest.

Sarah: [00:45:15] My pleasure. Thanks so much again for the invitation.

Announcer: [00:45:18] Has been a production of the 3C Digital Media Network.