CPAP Education Outreach

[JQLewis]

The knowledge contained in this forum is an invaluable resource for people suffering from OSA and related conditions. Pretty much a unique resource. There are some places like cpaptalk, but none quite as open and honest. None which cuts through the ignorance and indifference of the majority of the medical establishment.

One drawback to cpaptalk is that it's just an online forum. Its capacity is limited and its ability to do outreach is non-existent. Another major drawback is that it gets information to people too late in the process. I would have benefited much more from the knowledge I have gained here if I'd known it before I sought treatment.

The answer, it seems to me, is outreach. People need to be made aware of the perils of undiagnosed OSA and the pitfalls relating to treatment. Who's doing that now? Who can do it effectively? The CDC and NIH are starting to beat the drums a little more loudly, but they're too much a part of the medical establishment to be truly critical. The ASAA is likewise too beholden to the powers that be to do the job of outreach properly.

It seems to me that the only people capable of doing outreach properly are the people here, patients who know the ropes and are willing to be honest, even if it means ruffling a few feathers. If we don't do it, who will? What I propose is this:

1- Put together a group of people with the necessary skills to get a project like this into action.
2- Set up a crowdsourcing effort to get seed money.
3- Establish an organization to do outreach. It will have to be able to sustain itself while continuing to do this outreach. Membership dues, selling promotional material, further crowdsourcing, whatever it takes.

Does this make sense to anyone? If anyone is interested, please reply in this thread or by PM. I also set up an email account: osaaction@verizon.net. Thanks.

[JQLewis]

Bump. Does anyone think an outreach effort makes any sense, whether you wish to participate or not? 20% of the US population in need of diagnosis and treatment, with 90% currently undiagnosed? Who else can better tell these people what they need to look out for in seeking treatment?

[Julie]

Do you think anyone's hiding things from potential patients? Soliciting them is not ethical, and there is so much info out there these days for people to see, but you can't make them be tested or treated unless they choose to, even with the best advice there is. It's a good idea, but I think it's the doctors who need educating when people come in with symptoms, not the patients. Figure out a way to reach the doctors and you'll be rich.

[palerider]

Figure out a way to reach the doctors and you'll be rich.

besides, they've got more money

[Wulfman...]

Yeah, the key is to get the information to the prospective patients BEFORE they need it........but, the patient information is protected by HIPAA.
Do you really think the doctors and DMEs are going to help alert the prospective patients that they're about to be royally screwed?


Den

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[Guest12345]

Education starts with the physicians. However most physicians are no longer meeting with sales representatives, so it's simply a drop off information (you know they never read it) and go. We as patients are our own best advocates, however how often do we outwardly tell a physician 100% of our symptoms. Did you really complete the Epworth sleepiness scale correctly when you were asked to fill it out or did you fib a little because you didn't want bad numbers? Perhaps a standard of care should be an annual Epworth scale filled out every visit. Based on the score, the dr orders a sleep study.

[TechJungle]

What about the American Sleep Apnea Association?

Who we are

The American Sleep Apnea Association, founded in 1990, is a 501(c)(3) nonprofit organization that promotes awareness of sleep apnea, works for continuing improvements in treatments for this serious disorder, and advocates for the interests of sleep apnea patients. Learn about the leadership team.

Mission Statement

The American Sleep Apnea Association is a patient led 501(c)(3) nonprofit organization. We are dedicated to improving the lives of those diagnosed with sleep apnea and to advocate for those who are undiagnosed. Our goal is to increase diagnosis, and reduce unnecessary injuries, disabilities, comorbidities and premature deaths associated with this disorder by advancing sleep apnea awareness, education and research.

[snip]

[palerider]

What about the American Sleep Apnea Association?

*falls over laughing*
*hurts self*
*limps to the bathroom for painkillers*

[Wulfman...]

What about the American Sleep Apnea Association?

Who we are

The American Sleep Apnea Association, founded in 1990, is a 501(c)(3) nonprofit organization that promotes awareness of sleep apnea, works for continuing improvements in treatments for this serious disorder, and advocates for the interests of sleep apnea patients. Learn about the leadership team.

Mission Statement

The American Sleep Apnea Association is a patient led 501(c)(3) nonprofit organization. We are dedicated to improving the lives of those diagnosed with sleep apnea and to advocate for those who are undiagnosed. Our goal is to increase diagnosis, and reduce unnecessary injuries, disabilities, comorbidities and premature deaths associated with this disorder by advancing sleep apnea awareness, education and research.

[snip]

They don't even have a "working" website anymore. Did you actually click on the link you provided?
And, when they did, they were supported financially and controlled by the manufacturers.
Their actual "support" was virtually non-existent. It was a highly moderated forum and "real" information was forbidden. Links to other sites were removed and forum members were banned or threatened or their postings were edited or deleted when they tried to offer meaningful information.

In short, it was a joke.


Den

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[OkyDoky]

The link he provided was still there and looks like a working site but if you click on the forum it is not working.

[kaiasgram]

The ASAA patient support forum has been offline for over a month. It went down shortly after the new moderators started to lift some of the longstanding restrictions on allowable content --It looks like the disabling of the forum is a reflection of how important the patients' voices are to the ASAA...

[OkyDoky]

The link he provided was still there and looks like a working site but if you click on the forum it is not working.

The ASAA patient support forum has been offline for over a month. It went down shortly after the new moderators started to lift some of the longstanding restrictions on allowable content --It looks like the disabling of the forum is a reflection of how important the patients' voices are to the ASAA...

Which really reflects that it's not the direction that the OP was thinking of promotimg.

[TechJungle]

What about the American Sleep Apnea Association?

[ quote from website snipped ]

They don't even have a "working" website anymore. Did you actually click on the link you provided?
And, when they did, they were supported financially and controlled by the manufacturers.
Their actual "support" was virtually non-existent. It was a highly moderated forum and "real" information was forbidden. Links to other sites were removed and forum members were banned or threatened or their postings were edited or deleted when they tried to offer meaningful information.

In short, it was a joke.


Den

Had a brief look around their site after posting the link.

Most recent newsletter is 2012. No financial statements after 2009. Position statements page is blank. Not a good look, obviously.

What about myapnea.org - Patient Centered Outcomes Network listed on their home page, which appears to have 1,130 members?

TechJungle

[TechJungle]

... The ASAA is likewise too beholden to the powers that be to do the job of outreach properly.

Oh, ASAA = American Sleep Apnea Association. Sorry, I did not pick that up when reading the OP.

TechJungle

[49er]

The ASAA patient support forum has been offline for over a month. It went down shortly after the new moderators started to lift some of the longstanding restrictions on allowable content --It looks like the disabling of the forum is a reflection of how important the patients' voices are to the ASAA...

It is my fault as this happened after I got reinstated to the forum and started posting there. All jokes aside, interesting post Kaisgram and something I wondered about myself.

49er