Thank you for joining us for Talking Sleep, a podcast of the American Academy of Sleep Medicine. I'm your host, Dr. Sema Kosa, Medical Director of the North Dakota Center for Sleep in Fargo. Today's episode is sponsored by Takeda. For eight seasons of Talking Sleep, we have been trying to create educational content for our sleep medicine colleagues. Imagine our surprise when an engineer reached out and suggested talking about patient-facing platforms and how useful he found them. David Messerschmitt is a retired engineer who has been using platforms like Sleep HQ and Oscar to better manage his sleep-disordered breathing. His colleague Stuart Crisp is a super user on the platform and has shared his insight with thousands of people trying to better understand their sleep apnea and the data from their path devices. Both are engineers from opposite ends of the earth and are here to share their knowledge and expertise on the various patient-facing open source path platforms and how they use these data to improve their sleep apnea treatment. David Messerschmitt is a retired computer and signal processing engineer and has been active on Sleep HQ for years. Stuart Crisp has a control systems engineering background and is one of the most active users on the Sleep HQ platform. By way, a full disclosure, they did try to reach out to the creator of the Sleep HQ platform to invite him to join us, but we're unsuccessful. Welcome. We're so happy to have you here today. Thank you. Great to be here. Thank you. So I will say that we do receive emails from non-sleep clinicians, but I think a majority of those are trying to sell something, right? They're self-promotional, they're trying to sell a service or a product. And David, I think when you emailed me, I had mentioned to you that we have had a few sleep medicine colleagues ask about these patient-facing platforms, but we were just never able to find somebody who is knowledgeable enough about them to talk to us. So we are very eager to learn from both of you. Maybe should we start with Sleep HQ? Tell me about Sleep HQ. Well, Sleep HQ is a global community of users, probably 100,000 plus on a cloud-based platform where they just uploaded from CPAP machines and from other devices that the patient has, and is available for viewing with visualization tools and has tools for sharing amongst patients. And then its main role is as a online forum where various patients talk to each other and help one another out with their challenges. Stuart, what are your thoughts? Yeah, Sleep HQ is a platform that is used. Look, there's two out there. We're not pushing either one of my dog representable, David, doesn't represent either one of them. Oscar and Sleep HQ have different strengths where Sleep HQ is web-based, Oscar stuff, but they both do very similar roles. So you guys have been active in these online forums, which I think maybe started on Facebook. Is that right? My activity with Sleep HQ started in the Facebook group that began associated with it. But there are other forums out there, and I started with @meabord.com for all that, which is what I was going to ask. So what kind of role do you see for these forums? You know, started in the context of the overall sleep clinical spectrum, right, from clinic and testing and clinicians to then this community that you have described. Well, let me give my starting point on that. And then, yeah, Stuart can give his perspective. It's the question that I have in my mind is what happens to a patient's therapy after to leave the sleep center with a prescription and obtain their equipment from a DMA and DME. Patient's center left with many moving parts sitting at home, you know, with humidifier, hose, dozens of different mask options, dozens of chin strap and soft cervical collar options, different bed pillows, device settings like ramp and mask type, mask type and auto versus manual start and stop and so forth. And the experience in my experience, multiple possible challenges, including acclimation to therapy, comfort versus efficacy trade-offs and climate dependent mask rain out, hose anchoring challenges, mask and mouth leaks, mouth breathing, nasal congestion, sleeping position, leg movement and others. So it's really no wonder that PAP compliance is a poor overall, I would say. And it would be great if sleep centers could provide 24 by seven support to patients with all these issues. You know, with texts and staff who are well trained and have personal experience. But it'd be great if they had unlimited capacity for in-lab study and titration. But in fact, the fact is that sleep centers have limited resources and are reimbursed by insurance companies for limited and restricted range of services. And then if we look across the world in a global community like sleep HQ in many regions of the world, sleep center and sleep position appointments, our physician appointments are months long, lead times, patients are allocated, one or two appointments to get everything right. And in some other regions and we encounter patients like this on the forum, they're left completely on their own with PAP as a do-it-yourself project if it's available at all. And so I think that online forums fill these gaps at scale by providing a global cohort of experienced and successful PAP users who are ready and willing to help add no cost to the patient or no cost to the medical system and to the insurance companies. And I think Stuart has his own perspective. Yeah, well, I have to tell you that hearing you talk about this makes me feel like we have thrown all of this equipment like into your arms and you're kind of struggling but you can carry it out to the car. And I feel like maybe for in my mind, I feel like I kind of thought a lot of that was done with the various DMEs but I also can appreciate that since reimbursement has declined that their bandwidth has probably also declined. And so probably a lot of it does fall onto the patient's sort of lap. I think you're exactly right. Yeah, I think that in my case, in my case, the DMA, instructed me how to use the machine when I picked it up and put a mask on my face and turned it on and made sure I could use it. But it really wasn't dealing with all the other surrounding issues. And they were available by phone if I called, but it was very difficult to get all of them. And I would say that they weren't really prepared to provide a lot of assistance. But Stuart, what is your experience with that? Yeah, Stuart, what are your thoughts about all this? Is this how it works in Australia too? Well, I think it works everywhere. I think you're exactly right is that we get given the equipment and we get a short appointment and we've got to try to take it all in and we go home and we go, well, what do we really do? It's definitely an unknown. And I think that's the obvious role for the forums is that the empathy, the encouragement, the support, the leading people through. And that's a really important role because it's there when the person needs it. And so is that how you stumbled upon this? Is that you were struggling and then you kind of found this online? No, I've been using the CPAP for about four years before I found the online community. Oh, was that what you used? Yeah, I actually came onto these forums when I had to switch machines from the Dream Station to the ResMed. Oh, sure, yeah. We all know why that happened. And what I did at that stage was find out information there and what I stumbled onto was a whole range of sort of different ideas and solutions. And some of the problems I was having are solutions that the doctors and the support I people, supporters, people weren't telling me what we found. And this is one of the big things about the forums is that some of the ideas we get are not yet proven by the medical industry, but they do work. They may not be entirely known to the doctors or some of the doctors. And actually some of the ideas are really, really towards the cutting edge, which is a little head of what's been proven and approved by the medical situation, the system system. And so, you know, people want to be doing that and they're trying to get there as well. So tell me, what is the data that you're looking at? Is this from the stuff that you get like on an interview or like from the card? Like what are you looking at? We put it from the card. It is exactly the same data that has been seen on air view. Okay. Yes. And then of course, there's also other devices that can be data can be uploaded, including oxygen saturation and heart rate from rings and data from smartwatches that show a sleep architecture. So and the particular platform that Stuart and I are on integrate all that data together.
and view it on one visualization. And you can see the relationship. - Yeah, sorry, so walk me through that. How do you get it to synchronize? - Well, all of these devices that I mentioned have internal clocks and metadata that's attached with the time information. And it's a little bit strange, resmed machines, even though they're cellular connected, sometimes their clocks are off by several minutes, as much as 10 minutes. And they don't change their clock when daylight saying these times come along. So usually there's, if you really want to carefully synchronize them, a little more work is required. The sleep HCOOB provides a time offset configuration that you can use to change the offset between the, you know, the steep app data and the other data. And also if you wanna, if you encounter daylight savings times which the users have to go in and reset their clock on the resmed. And I don't know why that's the case because since it's cellular connected, it could be a little easier to use than it is. - So if I'm hearing you write, it sounds like you can look at like a ring device so asymmetry and like a watch, like an Apple or Samsung or whatever, and your CPAP data, like sort of side by side or on top of each other. - Yeah, yeah. That can all be imported into one series of charts. So we just look at a series of charts one below the other with different measurements from the CPAP machine itself or from the atmosphere. Sleep stages in ASCII, you can also bring in sleep position from some devices. So yes, you've got a range of information and it should all be lined up. - So you talked about, like, well you talked about DIY steep app and it sounds like this is sort of a DIY sleep test. - I guess it is. We do it every night. - So I guess what I'm kind of wondering is, what is the resolution? Like can you, do you see it one night at a time? Can you go to breath by breath? Like how much detail can you get? - So generally when we bring up the charts, it'll show us the whole night, the whole time span. - Okay. - And we can zoom in on that right the way down to a minute or in some cases, it must be a bit too few. I can zoom in on a single breath. - Huh. So time wise, the resolution is variable. We can look at it, we can scroll along from left to right and we can go through to see the whole night status. We wish we can zoom on in a particular period or we can zoom well and truly out. And then of course, we also have the same trained data that the specialist generally get for our appointments. - So if I'm understanding this correctly then, does this platform, is it where the data live or does it use AI to provide clinical insight? Like what is the purpose of the platform? - Well, it really is where the data resides and where it's visualized by anybody that wants to look at it and one of the really nice features of SleepHQ because it's cloud based online is that the patient can create a share link and they can share the data for either one night or their entire account on the platform with others and that's often used to get comments from other users and super users like Stuart about their therapy and the improvements that could be made to their therapy based on that data. And also the share link can be sent by email to anybody. So for example, it could be sent to your physician by email. Is Oscar the same sort of idea? - Well, Oscar is the same sort of idea except there's it's not online, the data stored on the user's computer. And so the only way as I understand it and maybe Stuart will correct me, the only way to share the visualizations that you see which are extensive, but the only way to share them is to basically do a screenshot, is that right Stuart? - Yes, that's the way that's done on forums. You can, in theory share your data card, you have to load it up to someone or transfer, file transfer and then they can actually open up and profile a nice go for you. So you can give someone the full detail, but it's a bit more of a process. - So are Oscar and SleepHQ comparable or do they work together? - Comparable. - Okay, okay. And so one's what based and one is about this lives on your computer. - Yes. - Yeah, I think there's a big difference between the two and one being SleepHQ is a cloud based online service where all the data of all the patients is accumulated. Whereas Oscar is on each data's computer independently. And the SleepHQ approach offers a lot of other opportunities I think only some of which have been taken advantage of this far. But for example, they've already started doing analytics where they can-- - I wondered, okay. - Where they can look at all the data across a whole large cohort of 100,000 plus users. And they've done that, for example, in comparing different mass. And they've rated mass as a function of the therapy outcomes used in statistical measures. And have come up with a list of rating mass from the best to the least. And determine, for example, that the consistently best mass are those based upon nasal pillow. And that of course has challenges associated with mouth breathing and mouth leaks and so forth. And one of the big activities on the forum is advising people how to move to a nasal mask. And if they do move to a nasal mask, how to manage their mouth leaks and using mouth taping and vehicles like that. So there's all kinds of opportunities, I think in SleepHQ, that come from the fact that we've got all this data accumulated from multiple patients. - So what happens if somebody switches from a full mask to a nasal mask and then they need a lower pressure setting? Does that then go back to the clinician or do you change it on the platform? - Well, it's often, it isn't changed on the platform itself, of course, but as you know, the patients who are in the know and anybody who's on one of these forms is in the know, these patients. - That's fair. These patients can access the clinical menu and make changes to pressure settings themselves and they can get a lot of advice from other knowledgeable users and super users like Stewart about how to go about doing that. But we do encounter other patients on the forum who do say, well, no, I don't wanna do that. My Sleep Center and my Sleep position won't like that. I wanna go back to them, but in that case, the forum can provide them with expert guidance that they can use to inform the discussion with their physician. - Yeah, I always, it actually always makes me smile when somebody has a pressure of like 7.6 or something like that. And honestly, I don't mind, you know, because to me, this is sort of a, you know, like it's a partnership, right? And if 7.6 is your pressure and this is what you figured out, great, let's make the prescription match, you know, so that we're all on the same page. So yeah, I don't mind it. I usually will have a conversation just saying, okay, well, this is what I'm concerned about if we go up too high, too low, just keep an eye on this, you know. And I think it's just sort of an informed conversation. - Yeah, I worked with the Sleep Centers throughout this process and they were tolerant of me changing the pressure settings. And especially as I was advised to get, you know, to do weight loss, which I did. And as I was able to reduce weight, the pressures were too high. And as my Abney and intrinsically improved on its own. And so I had to reduce the pressure over time, or at least it was desirable to reduce it over time to track my weight loss. And, you know, I was able to do that myself. - Stuart, what were you gonna say? - I was gonna say, I also make the point, and it's a matter of forum etiquette, which maybe not everybody follows. But when I'm trying to help people, I try to give them some suggestions of settings or changes that they can test for themselves and make their own decisions. So I don't wanna be in control of the person's machine. I leave that to them. And if they involve the doctor, the extent to which they involve the doctor is up to them and their ability to do so. - So, you know, we've talked a lot about orthosomnia with wearables.
Do you see orthosomnia with even more of this data that's available? I'm going to make another point about my etiquette. Maybe again this is me personally. To me orthosomnia is a diagnosis so I certainly cannot tell people they have that. As a term it was reasonably new to me just recently. We do see people who are very fixated on their data and we do have regular conversations about you're reading too much into this just relax have a look at the trends. Let's get into what's going on one night is not a problem and all of these conversations and I think that's actually a really important role for forums to play. I think you're right. In somnia is not really something that clearly shows up on charts. We can see periods where they're maybe not asleep and they've had a break but sometimes they've just had a bit of a leak and take in the mask off. We don't know whether they're awake or what's happening during those periods. And so for us to put together a bit of a fixation on data within somnia and to turn that into orthosomnia I think is beyond our abilities within the forum. Yeah I would say that if we take orthosomnia as a generic term on playing anxiety adversely affecting therapy outcomes that actually a lot of what happens on a platform like sleepHQ or using Oscar for NukePAP users is to reduce anxiety rather than increase it because on the platform they get a lot of support and encouragement from other patients who have been successful and as they're getting practical therapy guidance in a choice of mass control and how to reduce leaks and dealing with position and movement and things like that it's actually increases their confidence which I think reduces anxiety and then I think as they see it's kind of a process of continuous and systematic improvement of their outcomes in terms of symptoms and so on which was my experience as long as that's happening then I think it's actually anxiety reducing. But then if you have we do see and I think Stuart can describe users on the platform who are who've kind of optimized and done all that they can do to improve their therapy and yet they're still looking there at their individual breath, waveforms and concerned about this or that and and that of course I don't think is a very constructive thing but Stuart you've seen users like that right? Yeah you certainly get people assuming and say what happened last night or what happened at this moment and time during the night and unfortunately a lot of the time as we don't know some of the time we can take a guess and most of the time we go well it was only one night so that's a problem and that's what we try to do is just sort of talk them down say it's a bigger picture relax sometimes show things up but really anything that you're doing has to apply to the whole night to try to focus on a short period is not specifically helpful and this is a pattern that happens like all day. Yeah I would say that most patients before they get to that level and let me call them users rather than patients because we're not physicians or sleep centers ourselves but most users before they get to that level you know either you know drift away and stop using the platform or in a number of cases stay on the platform but with the goal of helping other people because it feels good and they like to use their their knowledge to help other people but they're not really obsessive about their own their own outcomes. So let's take a short break and when we come back we'll talk more about patient facing pap platforms you're listening to talking sleep from the American Academy of sleep medicine. Welcome back to talking sleep we're talking with David Messerschmitt and Stewart Chris about how they use patient facing platforms to help others with sleep disorder breathing. So one thing I see on Reddit a lot is people talking about upper airways resistance which of course I love hearing people talk about this. Is this something you can see on the data that you can look at? So once again I'm going to make a small distinction there that upper airway resistance and particularly as a syndrome is a medical condition. So I'm not looking at it in that way. Okay. What I see is flow limitations. Fair. Okay that's fair. That's the same thing. So I will be talking about flow limitations and yes we definitely clearly do see that the shape of the wave is something that's quite important to look at. Zooming right in I'll go into it by a minute time window. Okay. And what I'm looking at is to see whether the top of the wave is flattened or whether the inspiratory part is some way misshapen I'm looking for a nice inverted U. And if it's not then we suggest that there may be some flow limitation happening. To a lesser extent we're looking at exploration as well but it's mostly inspiration that gets talked about. So do you base that just on flattening of the inspiratory limb or do you also pull in wearable like heart rate and that information? Mostly the flow limitation that we're looking at is the inspiratory limb because I'm looking at it from the point of view of physics where flow is increased flow is related to increased different pressure and reduced by increased resistance. So that's not really something related to pulse or anything else like that and that perhaps is starting to tie it together as a syndrome where it's what I'm trying to approach is just the breathing aspect of it and the response to pressure and pressure support. I appreciate it how you explained it when we were preparing for this. How you explain it to users that they woke up because their breathing was hard even though it didn't technically stop and I thought that was such a lovely way of describing this and I think I might steal that actually. We do see that I'm not normally talking about waking up very often. Sometimes we're waking because of leaks that makes a big one. What we do see are the arousal breaths, the rarer type idea and of course we don't know that it's technically a rarer but we do see the flow limitation, the flattening of the waves beforehand followed by one big deep breath and some disrupted breathing after it's sometimes you're gonna see a an a clear airway event. And that's a disturbance and then may not be fully waking but we see patterns of these in the breathing on the whole night breathing chart we see spikes all the way across the breathing and so we suspect that the person's not sleeping well because of those. So what about when you have events around sleep onset or wake onset like tell me about the logic behind these events and what you see. Yeah these ones are tricky what we see are clusters typically of KIA away events and this comes back to the fact that we're looking at the whole night of data instead of seeing a single KIA away index and a number what we can see is that all classes very much at the beginning or very much at end and period of sleep in between is quite consistent and not too much of a problem. The term that gets thrown around with the forums is sleep wake junk and that junk theory is that it really is in that transitory phase it isn't affecting your entire night sleep. Yeah. It's seen as something of a nuisance because it affects your AHI and excuse the impression that your sleep is poor when in fact your sleep is pretty good it's just the transition that's not. But realistically I think it's fairly poorly understood and there's not a lot that we have in terms of effective strategies we can play a little bit with RAM and suggest a few things like that but it is an area where I think people tend to write it off under that junk heading and tell people look past and focus on their period of sleep. Well I like that you call that junk because you're sort of not you're you're making it less important. Yeah we're trying to take away people's focus I've got this huge number of CAAs so it's your A-way events and we go well yeah but you're not asleep yet don't worry too much about it you're transitioning from being awake to asleep. Well that's exactly what we call them on a sleep study we we call them transitional events transitional central events so yeah. And this is the advantage I'm going back to something you said earlier about how do we use and what's the purpose of looking at the whole night charts we see things that aren't visible from the statistics so sleep wake junk is one of them we can see things like clusters of abstractive events so again it looks like a person has a very high abstract event near it count but those are clustered together they likely to be positional and they're actually unlikely to respond to pressure anyway so it's important to know that they're happening in approach and in different ways and we can sometimes see difference between abstractive and central breathing just by the envelope of the breathing curve. And clear away so interesting it's important to distinguish between the sleep wake junk the stuff that's supposed to razzle or the CAAs that are part of a periodic pattern of breathing and we can see that from the night charts that you don't get from the statistics we can also see how the pressure is responding to flow limitations, snore abstractive ideas and what's going on why you have the pressures you have.
Yeah, there's lots of data and lots of reasons for looking into the whole night data that goes beyond the statistics that come out of, well, just the sleep report on the front of the machine. Yeah, well, that's it, right? When you're just looking at the HI that's over the night, but I appreciate the detail. And I remember that we can see breath by breath too for the last maybe week, depending on the machine. But I don't know that we do it as often as maybe we should. I don't know. What I was thinking when you talked about clustered events, you know, you talked about position, you know, I was thinking about REM related events. Yeah. Yeah. And then, and then I assume you can also see desaturation if they're, if they have a wearable as well. Yeah, so if they have a desat, if they have an auxiliary ring, then we can see the desaturation is in line them up with what's happening in the breathing. REM is as good as our ability to identify REM as a sleep stage. If they have a wearable and the wearable is accurate with their sleep staging, that's a bit easier. There are some indications in the chart. Again, an auxiliary ring provides pulse, and that's very helpful. But otherwise, we're looking at the respiratory rates, tidal volume and minute event tend to give us a cue of when you're in REM. So what position sensor do you use? You know, when you talked about positional apnea, are you talking about a wearable or is there another device? Position what I'm wearing is an old iPhone that I strap to my chest and I run an app called somnipose. Oh, tell me about this. Android, you use an app called Torina. Okay. And words like the night shift belt. It monitors your position. And if I set it, it will set a vibrator or an alarm when I'm on my back and helps to feed me off my back. And the advantage of the app is I can pull the information off and put it into Asuka as well. So I can relate position to what's going on in the chart. Oh, can you really? I might add that the new users that come on the platform are very common, that the first things that we pick up looking at all their charts and so forth is positional issues of sleeping in their back part of the night and also leaks of various kinds. And so a lot of the initial discussion is all about how do you learn to become a side sleeper? How do you monitor your position? And how do you use some of the devices that are available for encouraging side sleeping and all of the issues surrounding where the leaks occur and what mask do you use? And how do you adjust the mask and various things? And of course, mouth breathing if they're trying to attempting to use a nasal mask. And so that's a lot of the initial discussion. And then typically what happens is, after you get past all of that, then you get into the pressure issues. You know, as your pressure crack can be fine tuned and it can be better than it is. But but the it's important not to worry too much about pressure, kinds of issues until you've gotten those other other things solved. So if I'm understanding, I'm now stuck on the sown oppose. So you use an old iPhone and do you put it in a belt? Like how do you make it stay just in a pocket? How do you think it stay on your chest? There are a couple of fix there. People tell you to use a money belt. What I did is I went and bought a couple of less-dicated luggage straps and bodied together. I was not expecting that. You do get running straps and things like that, or you can buy some stuff. I think everybody has a different solution and I'm aware of that. I always suggest you don't go get an iPhone and strap it to your chest and I don't actually go into detail of that because no, what a problem it was for me to first work out where to get these straps to hook together in a way that would hold the phone in place. Okay, I was wondering about that. Okay. So you had also talked about chin tuck. So tell me how do you- because I remember seeing this many, many moons ago in the sleep lab where somebody's head kind of flopped over and they had, you know, event after event after event and the tech went in and just sort of gently pushed his head back up and his apnea went away. And that was, you know, during my formative years and so this always stuck with me, how do you figure that out on the data that you look at? We'll see a quite a close cluster of typically obstructive apneas. Okay. So any cluster of events is a bit of a target of attention. It's generally obstructive, not central, although I have, or I do know of someone who has been helped with their central apneas by using the same philosophy. And so what we think is happening as the person is driving onto their back. So chin tuck is generally positional. Their pillow may not be great for them and so what's happening is their head's been pushed towards their chest and they chin towards their chest and so they are obstructing their airway in the process. So when are you telling them to you? Well, solution for it's an interesting one. We tell them to go to a pharmacy by a soft cervical collar and sleep with it and the results can be absolutely amazing. Huh. And so they just sleep with a soft cervical collar and it keeps their chin from tucking. Sure. I do it every night. Whereas a soft cervical collar, a small firm collar and it helps keep my neck straight. I may not need it at the stage, but it's certainly something I used in the early days. It has the added advantage it keeps your jaw closed so it helps with leaks. Okay. And so the difference between that and the chin strap is that the collar does both duties of keeping your mouth closed and preventing your chin from tucking. Cheers. So as an example of the kind of discussion that goes on in the forum, you get into soft cervical collar. You know, you suggest that somebody uses that and immediately the conversation adds off into, well, there's multiple different brands and styles of cervical collars that are available and which ones are the best. And then you typically multiple people who have been using such collars, jump in and relate their experience. And then hopefully that helps the user to arrive at a suitable solution for their own circumstance. So let's get into some detail that I didn't realize that you could see. So I think you had termed this high level waveform forensics. Tell me about that. I'm not, that might have been something that David's describing. I don't know best for us forensics, but we certainly see useful things. One of the big ones is we can see leaks and that's very useful. We can distinguish between mouth leaks, mouth leaks and holes and tubes. So there's a difference in the pattern and the way it looks on the charts. So we do see that. As I said, we've already gone over the flow limitations. We can see the difference between obstructive and centrals, just some extent. So the correct path, quite often is we see a pattern of breathing and this is more an expiratory limb, but it gets termed palatal prolapse. That's the correct medical term. But we can see that quite frequently. We don't have any real solutions other than position. And then, well, that and the other suggestion there is go talk to your ENT and see if there's something anatomical that needs to be looked at. And then we can dig into other aspects. One that I see quite commonly is that the machines report inspiration and expiration time. And those are frequently wrong. So by checking in on the breathing wave, we can confirm that. And the significance of that is that if we're working with a bi-level, then having the wrong inspiration time, it's suggestive of premature triggering. So it's funny that you say to check with your local ENT. So I actually did check with one of one of our ENT colleagues because I wanted to ask, we had kind of gotten into this conversation about palatal prolapse and what that looks like, right? That sharp vertical drop off at the end of the insuratory wave. And then epiglottis collapse. And so I asked him what he thought about this. And he said, yeah, they've been popping up in the literature. They haven't necessarily been validated with a large effort. But he was saying that maybe there's a case to be made that when you have the lingo and the laryngeal surfaces of the epiglottis, that maybe PAP is hitting both sides. And doesn't necessarily open it up as much as it should. And that may just be because the pressures are so high. And so, you know, it just, it was an interesting kind of hearing it from you guys. And then sort of checking with one of our ENT colleagues, you know, because I'm a pulmonologist. So I, I rely on ENT colleagues. But he was kind of, you know, suggesting that, yeah, you can sort of see these waveforms. They just haven't been largely validated. So interesting. I think that, I think that palatal prolapse illustrates something that happens fairly often in the platform, which is you can see some suggestion of possible cardiac issues or pulmonary issues or issues that need to be addressed by ENT. And so you can suggest that patients see different specialties.
these, which maybe something that is or is not suggested by their sleep position or their sleep center. So I think that's a kind of a valuable aspect of having this large community looking at the data. Yeah, that's true. I mean, it's a good suggestion, right? Oh, while we see something, maybe go see ENT. The other thing about palatal prolapse is that it's not across the whole night. It's only in periods. And that's one of the reasons why we suggest to people that it could be positional. The other one is that we do not see that as people try to change pressures to respond to it, that is terribly effective. And when we do tell them to use a positional therapy, we tend to get better results. Oh, that's interesting. It happens. And it doesn't only happen on your back. I see it in my charts every now and again, but I only see it for short periods of time. So what about periodic limb movements? Can you pick those up? Not really. Well, in that case, there's not a whole lot we can. I don't I think Stuart will say that he doesn't see too much evidence of that on the charts that we see. But I think that it's not an uncommon suggestion on the platform to suggest to patients or users that may sense that they have an issue along those lines to set up a low-cost security camera and do time lapse video of themselves at night. I'm in fact on that for myself. And in fact, I could see leg movements. And I took that back to my sleep center. And my nurse practitioner at the sleep center prescribed me some gabapentin to address that issue. So that's an area where the data that we see is not really adequate. I think Stuart would agree is not really adequate by itself, but we can suggest other ways that patients can investigate. Yeah, we've got nothing that may sense limb movement. The oxymetry rings have a movement sensor, but that's on the hands, not on the feet. We have had the strange suggestion from people to wear the oxymetry sensor on their toes. I think they have been people who have done it. But in the charts, there's not a lot that's there. We tend to suggest it when we are seeing arousal breaths. So there's pattern of a deep breath and something going on. And if it's not got flow limitation beforehand, we scratch our heads and say, we don't know what it is, maybe it's a limb movement. We are amateurs. We take our guesses. We try to work things out as best we can. But that's all we can say. I'm not aware of anything that tells us that we're always willing to learn, but we need somebody to learn from. Well, and I think that's what I love about our field is I feel like we're very collaborative, right? We all come at it a little bit differently and we all learn from one another. It's interesting to me that you've added now a camera to looking to look at limb movement. So yet another DIY sleep study, right? The camera was also my first way of measuring position. Oh, okay. Yeah, that makes sense. So I will tell you what you guys taught me when we were preparing for this. So I've always known that you can turn a by-lawal pap into a CPAP by setting eye pap and ePAP the same. But you taught me that a CPAP can be turned into a by-lawal pap. Yes, this is where I have to be a little bit careful about it because it's quite a controversial topic about the EPR as the same as pressure support. I often say EPR is about the least understood setting on the air sense machine. We're as meant to describe it as a comfort feature. Yeah. But the thing is that when it's used and turned on overnight, we can see distinct differences in the therapy. And we attribute that to the fact that it's increasing min event which is overcoming flow limitations. And the relevant of that is that flow limitations drive the auto algorithm to increase pressure. So we don't see the same ranging behavior of pressure by using EPR. Now if you look at a mathematically EPR and pressure support are pretty much the same. But I'm going to emphasize this bit about limited by-level therapy. Because there's no other by-level settings, it's limited to three. And any sense is definitely not a by-level machine. But there has this ability to come into it. I'm also going to point out that when we're talking about this, we are comparing it to a V-auto machine. And so the Australian listeners need to either block their ears or learn something because we don't get V-autos in Australia. Okay. And it's a very common thing in Australia that adamant that by-level and EPR are not the same and they're correct because what we have are the, you see the air curve or Luma's machines but the SST and STA varieties. And the difference between those machines and the V-auto and in fact the air sense is a feature called Easy Breathe. And that is a big difference between the two. Easy Breathe effects rise time. So yeah, I describe EPR as providing that limited bit of by-level therapy similar to the V-auto. You had shared with me that it is not a hardware issue, it's a software issue. Yes, well at the moment we're just dealing with pure settings that it's there. But then beyond that, the hardware is, as we understand it, essentially the same between an air sense and a by-level, not a res-meable. Each control will be quick to point out any differences. But there are people who are doing some interesting work to get past that and they are finding ways to turn their air sense machines into by-levels. Yeah, that I had no idea. The EPR, yes, but we kind of many by-level, but the software part was very enlightening. I learned that from you guys. There are some, probably some ethics, because we found some of those. Yeah, I would agree. So I feel like a lot of these platforms and communities have arisen because of a need that we aren't meeting. And so instead of this being antagonistic where it's, oh, the sleep center is not helping me, I'm wondering how can this be more collaborative? How can we start seeing some of these details and how can we partner with our patients to do this? And again, we struggle, right? Because our time is so limited. Yeah, look, I have to agree. Forms definitely fill a need that medical community who does not probably cannot, and in some cases, I think, should not. The people are there, other people are motivated to take action to improve. So that's the first thing. And they often prepare to try things that wouldn't necessarily be encouraged. And unfortunately, what we do see in the forum is a reasonable set of horror stories of why they're there and what's gone wrong. The thing about the forums, and this is where it's, or what is useful for the medical side to understand is that the people who are there answering the questions, they're just to do their best to help. There are different personality types and traits that come into play. And forums are interesting places. And we often look at someone and wonder whether Dunning Kruger is perfect as a play. But the three ways I've come up with that really are helpful is that the forums do the best with the knowledge that have. A lot of people are basically poorly informed. They're very keen to learn. And so getting access to a body of knowledge is something that would be really, really useful because then we are presenting better information. We're not presenting some of the rumors or stories that are unproven or uncertain. And eventually that may have come down to sort of training materials and courses and stuff like that because the other thing that's difficult on a forum is for someone who asks a question is to know who did this into. They'll get five different opinions and very different opinions and which one's correct. So again, a method of establishing competency, I believe, within forums would be useful and perhaps the medical community supporting that as well. The other big one is, well, we need to put that question back onto the medical community and ask what they want from the forums. Yeah, that's fair. The big idea here is that maybe the AASM is exactly the right association to put together some sort of working group between medical community and forums to try to think this question through. Yeah, I mean, I feel like in the last, you know, probably 10 years, we've had a lot more involvement from patient representatives. You know, I've learned a lot from our colleagues who are living with narcolepsy, for example, and what, you know, catapultsy feels like. And even, you know, sleep apnea, like all of these things that you've shared, like just think about the lengths that you've gone through. So now I'm picturing you with a soft cervical collar and then you've got this luggage belt around your, you know, around your chest and then you've got a camera set up in the corner like you're looking at all of this information. And clearly, there's, there's this thirst for knowledge. And I think one of the things we have learned with, you know, all of the social media is that it is really important.
to have that information out there instead of just trying to sort of, you know, tackle one tiny thing at a time as it pops up like mouth taping, turn into a big thing. And so there's, I think, room for partnership. I also feel a bit interesting when I get doctors come onto the forum and they have been doctors coming to seek help and information. I kind of have a bit of imposter syndrome of why you're asking me, the person to make this. But realistically, what I'm doing is something different. I'm doing my engineering skills reading charts and that's not really a medical skill. I'm sure it's not taught to you in medical school or how to go and read and interpret a trained line across the period of time. And I'm certainly helped with my background by having programmed control systems at CPAP machines, just a programmable control system. So I have some understanding of how the software is done or how the data is stored in a historian and represented in a chart and things like that. So yeah, it's very interesting to see the communities. Definitely there is pace for it and some of the doctors have found their own way and found some help in the community as well. It makes you feel better. I get imposter syndrome every time we record one of these. So are these platforms only for patients or confusions access that information to? The platforms can be used by physicians as well. In the case of Oscar, it's a case of installing the software, getting the data and creating a profile that's on your own machine. That's pretty easy. In the case of SleepHQ, I understand, well, there is a clinician's account and I looked on the website and couldn't see a lot of detail about it, but I have seen it. And what it does is give you access to the patient's information in exactly the same way as the patient sees it. It's also got some facilities to keep additional information about the users about their sleep studies. And so it is available. I don't know the details. The best I can suggest is that you contact SleepHQ directly and say, "I'm a clinician. What can you offer me?" As far as I know, it's free, by the way, but I'm not sure of that. Well, and I think it's an important setting expectations too, that maybe this is something we review together in the context of a clinical visit rather than asynchronously, because I can see how that would just open the floodgates and overwhelm the already stretched clinical staff, but maybe just having setting aside that time during the visit to review it together, I think would be meaningful and helpful. Well, all of these platforms are simply software-based and any features that are desired can be added. So if there's any kind of a way in which physicians or sleep centers could have access in ways that would be beneficial, that can always be added. That's a really good point. So Dave, tell me about the role of the forum and how it kind of helped you with your own education. Yeah, I actually think that patient-in-the-self education is a really important part of successful outcomes in medical therapies or medical treatments where you have conditions like sleep abney, particularly where there's a very complicated at-home part of the equation. And being 80 years old myself, I'm very experienced with a lot of conditions and learning about them myself and having more confident conversations with my physicians. And I found that one of the reasons that for joining a forum like C-BHQ and spending quite a bit of time helping other patients on the forum is the opportunity it gives me to learn about the various aspects of the therapies. And so I feel like that's a real important aspect of these kind of online forums. In terms of patient education, something that's is important is to learn your own machine and take some control or some responsibility at least for your own therapy from that. And one of the things that happened is that I am at the position I'm at because I did that. And fortunately, I've got a better ability to do so with my continuing background. But I started out having desaturations three times a night well below 90 percent. And I'm now at a position where I have a vulnerable controlling my oxygen levels to nice consistent 95 percent throughout the night. Unfortunately, I did a lot of that myself and I needed to. And so the education aspect is important at the very least to drive the process to learn which questions to ask of who but in some cases it may be necessary to take a bit of control themselves. But this again is especially around the sleep hygiene and the little bits on the side. If you don't educate yourself on the use of a soft cervical color, you may never fix things like physical health. Now, all you may never even know that you've got it. So do you have any take-home messages for our sleep medicine community? Well, let me take a first crack at that because and pass it on to Stuart. I think that you know, today really the only interface between these online communities and I'm aware of and sleep medicine and sleep centers is through the individual patient. But I think that can be greatly improved on and there's really an opportunity to conscientiously and proactively incorporate peer online communities into the sleep medicine practice. But I would add beyond beyond that that specifically cloud-based communities and this gets into my specialty in data science and so on. But cloud-based communities offer the opportunity to capture data across a longitudinal selection of, you know, it's cohort of a large number of patients and that can be the basis for a lot of things we haven't had time to talk about today. But things like observational clinical studies and training of artificial intelligence for therapy optimization and things like that. So I think this is an area that's really right for opportunity. Stuart, your thoughts? Yeah, from my side, I'd like to highlight that the way we look at Michael charts using either sleep HQ or Skull, any of the other software that's available. Pretty well identifies it, I think a gap in the medical system. You know, the detailed analysis of data is different and it's useful. There's type of work that I'm looking at and the charts I'm looking at. The summary statistics certainly do not tell the whole story and a single night sleep study where the sleep tech is looking at data in basically 30 second epochs, maybe a bit longer, but they're not always looking at the whole night. I don't think that tells the whole story. And I think what this requires is a different set of skills than a far more technical set of skills than doctors probably have, but certainly should be expected to have. And I think that if the medical community is not filling that gap, then it's perfectly natural that a forum is going to step up and try to do so, whether they do it well or not, it's a different matter, but the need is there. And to the extent that it is acceptable for a forum to exist and fill that gap, support with better resources or more complete resources would definitely help. Yeah, I mean, I think I would push back a little bit in that I think the biggest constraint is not necessarily the ability. It's the time. Yeah, this is definitely some a matter and I've had this conversation with my own sleep specialist when I've been talking about it. And she's fairly prominent within the Australian medical community for sleep. And I did say to her, I'm doing this on the forum and I'm helping one person at a time and I'm helping several people per week, but realistically, I could not do more than what I did unless I was paid. And the medical community cannot do what I've got unless there is a billing code for it. Yes. So I think it's important to first identify the gap, but also to identify the skills needed and then put somebody in there who can do the work and be paid for it. Yep, I think you're exactly right. And maybe that's how we meet in the middle. Yes. Well, thank you both for joining us today. I really do appreciate you reaching out in the first place and for being willing to share these new tools that we can potentially use to help improve patient care in our sleep clinics. It's been a pleasure. Thank you. Thank you. It's been a great opportunity. Thanks for listening to Talking Sleep, brought to you by the American Academy of Sleep Medicine. For more podcast episodes, please visit our website at aasm.org. You can also subscribe through your favorite podcast service. And if you enjoyed this episode, please take a moment to leave a rating or review. For more feedback or suggestions, email us at
[email protected]. I hope you'll join us again for more Talking Sleep. Until next time, Mrs. Sima Kosoa, encouraging you to sleep well.
so you can live well.
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