A newbie view of what the CPAP community needs to do

[Mark NJ]

Hi all,
Just began to read Definitions - Abbreviations - Terminology - Acronyms by rested gal. My heartfelt thanks for this recap of available resources. I noticed "Obstructive Sleep Apnea CPAP get smart fast" by Mile High Sleeper Gal and began to read that. This is a wonderful resource; something like this ought to be the next step after a patient leaves the doc's office with a diagnosis.

I'm a newbie - sort of. I was diagnosed in June 2010 and started with APAP in late June. No one told me anything about what I needed to know to succeed. Nothing pixxes me off more than that I wasted 6 months not knowing what I should do to be a well-informed xPAP patient. Now, while I'm still conscious of where I was (and am today) I'd like to offer the xPAP community my thoughts as to what our community ought to do to spare other newbies from my experiences - and no doubt many worse experiences.

First and foremost, somehow we need to get the newbie hooked-up to an internet resource such as CpapTalk.com (or one of it's competitors). And, immediately get the newbie to read a getting started resource much like Mile High Sleeper Gal's "Obstructive Sleep Apnea CPAP get smart fast" document.

Now, I know that we are in the 21'st century. Any person with an IQ > 50 ought to have as his/her first instinct to fire-up Google and look up any topic of significance as their 2'nd step following recognition of that topic of significance. Alas, notwithstanding my IQ > 100, I work in IT, I use Google regularly, and lots of other mitigating considerations, I didn't bother to Google "sleep apnea" for 7 months after my diagnosis. I imagine that lots of patients who get their first diagnosis won't think of Googleing as their 2'nd thought. Like me, they are are older (I'm 59) and didn't get an early-enough start in computers (I was 17 by the time I first used a computer).

While almost all patients will be more cleaver than I and Google "sleep apnea" within the 1'st month of therapy; even so, that's not good enough. The newly diagnosed patient should do absolutely nothing after receiving a diagnosis until s/he hooks up to a document like Mile High Sleeper Gal's. Such a document would tell the newly diagnosed what s/he needs to know to minimize the mistakes s/he will make in all the following steps.

I wish I could offer a likely-effective method of steering patients in the right direction. Unfortunately, this will be difficult because the the docs and DMEs don't see "an educated patient is their best customer". Neither the Docs nor the DMEs want to compete with an uncontrollable source of information such as the internet.

The correct point of intervention is the moment the patient is given a diagnosis.; i.e., before the patient is directed to the Doc's preferred DME. A patient is most likely to do what the doc instructs; so, if the doc could be persuaded to hand the patient a brochure directing the patient to an internet URL (or, list of URLs) then our intervention could be effective.

We do not underestimate the difficulty of getting docs to do anything. However, I think we can assume 2 considerations:
1. Docs really do have our best interests at heart;
2. Docs don't have the time to do the coaching the internet could provide.

If we are to achieve doc cooperation I think we need to take great care to avoid Doc-bashing in the resources we ask the the docs to refer their patients to; and, persuade the docs that they aren't going to get compliance increased above 50% unless they can get their patients the support that they can't afford to give them personally (nor thru other office staff). Moreover, the docs can't rely upon the DMEs to serve as an effective support service. We have to be scrupulous in avoiding DME-bashing as well; but, let's face it, the DMEs are for-profit organizations whose interests aren't nearly as altruistic as the interests we expects Docs to hold to.

Part of the message I think we need to get across to the docs and DMEs is that their patients will - eventually and inevitably - find these resources on the internet. When they find these resources on the internet they will inevitably ask: Why didn't my doc/DME tell me this right from the beginning? Some patients will be rude enough to pose that question to the doc/DME at their next appointment. Other patients (like me) are apt to just take their business to another provider without telling the Doc/DME why they are pixxed off.

A doc/DME who whats to survive in his practice/business will be better off if he tells the patient about these resources at the beginning.

If the community thinks this is possible, then I'll offer more thoughts about how to format the info to help the newbie access it in the most effective way. (We have a window of maybe an hour or two to get the newbie's attention and tell him what to do/avoid when he goes shopping with the DME. If we don't make the absolutely best use of that one or two hours, the newbie will make one or two of the predictable mistakes you all know about which are likely to doom the patient to failure.)

Regards,
Mark