Why We Created Empowered Sleep Apnea

By David E. McCarty, MD, FAASM (but you can call me Dave)

Empowerment!

PSST! Pass it on!

Obstructive Sleep Apnea is estimated to affect nearly a billion persons, worldwide.(1)

Here in the U.S., the prevalence depends on the definition. About ten years ago, a leading research group estimated the prevalence of moderate to severe Sleep Apnea in 30-70 year-olds to be 13% in men and 5% in women.(1)

Using population data from 2019, that translates to nearly 11 million men and 5 million women! If we expand the definition to include persons with so-called “mild” Sleep Apnea, those numbers swell to 34% of men, 17% of women1 (28 million men, 14 million women). 

Savor that thought, just for a moment: that’s a total of 42 million adults in America estimated to have Sleep Apnea, right now. 

Combine these sobering statistics with this inconvenient truth: There is a critical shortage of board-certified Sleep Medicine physicians in this country. When I say critical, I’m not playing. A recent estimate by the American Academy of Sleep Medicine put the ratio at one physician for every 43,000 patients in need of Sleep Medicine specialty services.(2)  

One more thing—and this may shock you—among the 42 million adults in the U.S. estimated to have Sleep Apnea, fewer than one in five have been diagnosed and started on treatment.(3) As our healthcare system scrambles to address this, we are seeing massive nationwide mobilization of remote services and home-based testing, heroics performed in an effort to bridge this tragic gap (3).

As the model for delivery of care becomes more centralized, it becomes more reliant on clearly-written and easy-to-follow--but necessarily simplified--algorithms of care. The individual experience inevitably gets lost in the shuffle. 

The New Diagnosis

[Houston, we have a problem.] 

The above combination of factors creates a catastrophic shortage of individualized, patient-centered coaching for this disease at precisely the time when such coaching is about to be needed by tens of millions—that is: as the mobile sleep testing revolution gets into full swing, and the vast majority of care is provided by non-physician providers. 

This is where Empowered Sleep Apnea fits in. 

My name is David McCarty, and I’m a Sleep Medicine master-clinician. I’ve dedicated my entire career to a strategy of practice called patient-centered medicine, which roughly translates to helping individual patients navigate their personal healthcare narratives, on their own terms, using science and evidence-based medicine as a guiding light.  It isn’t an easy way to practice medicine, but for me, it was the only way that made any sense. 

Sifting through a problem like Sleep Apnea takes time, you see?  Sleep Apnea is a challenging and complex Beast to get your hands around. A Lovecraftian-scale nightmare.

The Lovecraftian Nightmare of Sleep Apnea…

We’re gonna need a bigger fleet…

For starters, it’s a frustratingly nonspecific disease. It may (or may not!) cause symptoms. It may (or may not!) promote risk. It may (or may not!) respond to treatment. It may (or may not!) be causing the symptoms that bothered somebody in the first place! 

On top of that, treatments for Sleep Apnea are problematic. As a rule, traditional treatments like positive airway pressure therapy and oral appliance therapy can be expensive, cumbersome, and uncomfortable. They require insurance authorization, which requires special testing and specialist consultation. The physical nature of treatment can even cause a whole new set of problems with your sleep. 

A patient-centered strategy will always self-correct, and always in favor of the patient. 

For me, a patient-centered practice strategy is the only thing that made any sense, in trying to deal with the gigantic Lovecraftian nightmare that IS the experience of Sleep Apnea. Ultimately, it boils down to whether the patient is satisfied with their care, or not. Follow-up is essential, and longitudinal care is a better teacher than any textbook. 

A patient-centered strategy will always self-correct, and always in favor of the patient. 

This strategy taught me volumes about what it means to be a physician. About what one must do, these days, to take on the role of healer.

One of the most important lessons—perhaps THE most important one of all-- is that patients suffer as much from the system itself as they do from the underlying disease

Sometimes it’s hard to even know where to start…a true fact for patients and providers!

If it’s hard to picture how a fragmented healthcare system can accelerate suffering, cast your mind unto the following scenario: 

…after you tell your primary care physician you’re feeling tired and depressed, you’re set up for a sleep study so fast, it makes your head spin.

You receive a testing device in the mail, and after watching a short video, you put it on yourself.

You sleep poorly, and you can’t believe that the study provides any useful information.

Nevertheless, you drop the device off, and you wait. The study is interpreted by a physician you’ve never heard of, one whom you will never meet. The study report has all kinds of numbers on it, and it awards you with a diagnosis called “Sleep Apnea.” 

No one will talk to you about this result over the phone. You can’t get anyone to answer any questions. You’re told you have to make an appointment. 

You keep your follow- up appointment with a PA who tells you that you have Sleep Apnea, and that you’re going to need treatment. You don’t feel like there are any other options.

When you express reluctance, the provider scares you, and tells you that Sleep Apnea will give you a stroke, if you don’t treat it. You start to think the whole thing is a setup to sell you a device you don’t need. You leave the office feeling violated and swindled, and you decide you’re never going back… 

Priming Matters

Scenarios like this, sadly, aren’t uncommon. I spent my career helping folks like this, folks who had been left behind by the system, who reluctantly re-engaged because a trusted friend told them that I’d actually listen to them.

I spent my career figuring out specifically what people needed to know, to help them make progress on their individual journeys. I spent my career figuring out what they needed to know to feel EMPOWERED. 

People don’t need just information; they need guidance. Dry, unstructured information is everywhere these days. Empowered Sleep Apnea  provides something more valuable than Wikipedia ever could (as valuable as that resource is!).

Empowered Sleep Apnea stitches the information together with broad foundational concepts, giving readers a better intuitive sense of direction, allowing them to think their way through a problem.

Some subjects are hard to talk about…

Standard educational materials like disease-specific trifold handouts provide information on specific pieces of the Lovecraftian Nightmare. For many individuals, they’re too simplistic to provide any real understanding about Sleep Apnea as it exists in the real world, in all its complex glory.

Empowered Sleep Apnea is different. The ultimate goal is that the reader (or, in the case of the PODCAST, the listener) becomes an active partner in their own journey…acquiring learning allowing restoration of personal agency. Empowered Sleep Apnea is the first truly patient-centered resource to provide a rational framework for navigating the decision-making landscape within this complex and nuanced disorder, as it exists within our complex and fragmented healthcare system. It’s way more than a trifold handout.

It’s more like uploading a MasterClass on the subject, into your own brain.

An Outdated Educational Strategy? Disease-Specific Trifold Handouts: Simple enough to be useless for many.

(A Classic 1950’s Ad Campaign for Camel Cigarettes, as lampooned by yours truly)

The source material and clinical coaching for this cross-platform project all come from my clinical experience.

We used a combination of storytelling, cartooning, humor and cold, hard science lessons to make Empowered Sleep Apnea into an educational journey like no other—it feels more like a storybook than a text about a medical problem. 

If any of this sounds appealing, perhaps you’re ready for Empowerment.

Recommended Reading

1.     Peppard PE, Young T, Barnet JH, Palta M, Hagen EW, Mae Hia K. Increased Prevalence of Sleep-Disordered Breathing in Adults. Am J Epidemiol. 2013;177(9);1006-1014. To check out this compelling paper, click HERE!

2.     Watson NF, Rosen IM, Chervin PD, Board of Directors of The American Academy of Sleep Medicine. The past is prologue: the future of sleep medicine. J Clin Sleep Med. 2017;13(1):127-135.

3. Chi L, Chernyshev OY, Toedebusch B. The Mobile Sleep Medicine—The Innovative Sleep Medicine Patient-Centered Care Model (Mobile Sleep Care Model) for OSA Management from Hospital To Home. Abstract presented as part of Sleep Medicine Disruptors course, at AASM SLEEP 2021national conference.