Myapnea.org

JQLewis wrote:

Julie wrote:Sounds like it could be interesting, but in fact is really nothing right now... it might be a good idea to wait for it to be running before commenting...

My reason for posting this was that I was looking for some kind of activity related to patient-centered activism, and this is the closest thing I could find. They're not up and running yet, but it's obviously an effort with a lot of planning behind it and a lot of people committed to it.

I have frankly been appalled by my experiences with sleep apnea treatment, and I have been surprised at how little patient activism I've been able to find. As soon as I started posting here I was advised to forgo the medical establishment and "be my own doctor". While I completely understand the reasons behind such sentiments I would think that with millions of OSA patients we would be able to band together and demand better treatment. Is the ASAA providing adequate representation? Why, for example, is the traffic less on their forum than it is here?

This site IS the one true source for "patient activism".
The problem with dealing with the "medical establishment" is that they want to retain control over YOUR therapy.
Years ago, some of the users and members of this forum tried to form CUGI....... "CPAP Users Group International". However, there was one big problem.......getting information to the prospective users BEFORE they got sucked into the system. (It also takes money to run something like that.) Consequently, it never got off the ground. The challenge is to get people "enlightened" (knowledgeable) before they realize they were hoodwinked......given a "brick" (non-data-capable) machine, were denied getting or not given their prescription, not given copies of their sleep study, passed off to a DME which had cozy connections with the doctor who sent them there, denied a wide assortment of masks to try........and many other issues.

This is what Google turns up: https://www.google.com/webhp?complete=0 ... yapnea.org

You can actually look at some of the website pages if you start from the above Google page. The link in the OP's first post here is to the "splash" or portal page of the website and it doesn't link to any of the other pages in the site yet.

From a quick glimpse it appears to be some sort of research project. You can see where they say "when you sign up for the study..."

The ASAA is involved (and not just referenced on the portal page), which makes me wonder if the myapnea project will ever be truly "patient-centered."

Everything is run on money. Charities are bigger business than medical research.
Charities make money while research uses it up.
Look at what a financial success has been made off of pediatric cancer.
I wonder how much of those billions have been directed towards finding a cure . . .
Sadly, that would not be "economically advisable".

The site appears to be a study run by the Patient Outcomes Research Institute. According to their website, "The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at http://www.pcori.org.

The reason is clearly printed on the bottom of the site.


The information provided on this site is not intended nor recommended
as a substitute for professional medical advice.


Why is this not hard to understand.???

I'm getting bad vibes about this site.

It may not be a scam of any sort, but it looks like it's affiliated with the medical supply side, not the patient side. Even if they're 100% honest, their allegiance is suspect.

That doesn't mean it's a bad site. It might be helpful and have some good information.

I welcome a new website. We can always learn more about our condition

(fingers crossed) --not really; the webs, you know.

I really think that money is the key to change, not an impediment to change. The real enemy, it seems to me, is not greed but stupidity. Give a patient a brick and what have you saved? A hundred bucks or so? Make sure a patient is receiving effective treatment and what do you get? A repeat customer who will soon buy more than a hundred bucks worth of replacement supplies and eventually replacement machines. Everyone loses when a patient is non-complaint and everyone gains when they find successful treatment.

I figures that AASA was less useful than they might be when I couldn't find any specifics of their activities on their website. They've been around since 1990. Why don't they brag about their accomplishments? There is a difference between advocacy and activism, imo. Any organization with its base in Washington is suspect. The myapnea.org effort seems like an attempt to cash in on a government program designed to assist patients. Some good may come of it, but probably less than should be the case, if their motive is simply to sink their snouts into the public trough.

As far as reaching people before they become enmeshed in a system with so many pitfalls, it may not be as impossible as it seems. I posted recently about statistics concerning the undiagnosed in the US. Then I did a bit more research and found data on the National Institutes of Health website that were startling. Much higher estimates than I had previously read, and this is the government's own estimations. 20% of the US has OSA with 90% of them undiagnosed. That translates to 28 million undiagnosed OSA sufferers in America alone. There are indicators which make it possible to do outreach with a fair chance of reaching these 28 million people, or a reasonable percentage of them. Get to them first and you can warn them of the pitfalls of the current system. Get to them first and they can become the muscle behind a true patient based initiative.

archangle wrote:I'm getting bad vibes about this site.

It may not be a scam of any sort, but it looks like it's affiliated with the medical supply side, not the patient side. Even if they're 100% honest, their allegiance is suspect.

That doesn't mean it's a bad site. It might be helpful and have some good information.

There did seem to be interest in hearing about the experiences of people who have not succeed at pap therapy for various reasons. As one of those folks (although I am hoping my current sleep doctor's recommendations will change that), I find that encouraging since the research on this issue is mostly horrible. And no, contrary to popular belief on this board, it isn't always due to someone's bad attitude.

Anyway, actions speak louder than words so only time will tell whether they are sincere or not. But for now, I am willing to keep an open mind.

49er

kaiasgram wrote:The link in the OP's first post here is to the "splash" or portal page of the website and it doesn't link to any of the other pages in the site yet.

I added a link to the only page I could find with useful information about the project. It is not from AASA. It's really incredible how you have to go through 5 or 6 pages to find any real information on the project. Another warning sign, imo. This ought to be one of the first things you see on their website. Why is it so hidden?

I should also note that the statistics I cited from the NIH website is based on two studies from 1999. I'm sure conditions have changed since then, but for the better or worse I can't say. I tried to find more up-to-date estimates, but couldn't find a more recent study from them.

I am (a small) part of the MyApnea.org project. It is a collaboration between sleep apnea researchers at Brigham and Women's Hospital and the American Sleep Apnea Association, among others. As mentioned earlier in the thread, the project is funded by the Patient-Centered Outcomes Research Institute (PCORI). You can read more about the sleep apnea network and other patient networks here: http://pcornet.org/patient-powered-rese ... sociation/

We are not a scam site ( ), though we are guilty of not getting our site up and running in a timely fashion. Hopefully our launch is on the near horizon, at which point we will welcome all-comers. Our ultimate goal is to add to the collection of useful web resources (like this forum) available to sleep apnea patients.

mrueschman wrote:I am (a small) part of the MyApnea.org project. It is a collaboration between sleep apnea researchers at Brigham and Women's Hospital and the American Sleep Apnea Association, among others. As mentioned earlier in the thread, the project is funded by the Patient-Centered Outcomes Research Institute (PCORI). You can read more about the sleep apnea network and other patient networks here: http://pcornet.org/patient-powered-rese ... sociation/

We are not a scam site ( ), though we are guilty of not getting our site up and running in a timely fashion. Hopefully our launch is on the near horizon, at which point we will welcome all-comers. Our ultimate goal is to add to the collection of useful web resources (like this forum) available to sleep apnea patients.

Clearly the project is not a scam. But I have a hard time imagining that the ASAA would get involved in any project that might highlight the need for a paradigm shift where patients are the primary agents of their PAP therapy in partnership with their doctors, including learning how to adjust their pressure settings as their needs change. This is probably the most important aspect of sleep medicine that needs radical change, and it is the reason that this forum is a lifesaver. You must be aware that the ASAA-sponsored patient forum censors and deletes any discussion about this very important issue.

I'd sure love to be wrong about my suspicions about the myapnea.org project and the influence of the ASAA on the direction the project takes.

mrueschman wrote:We are not a scam site ( )

I agree the site doesn't appear to be a scam.

My biggest concern is about the subconscious attitudes in the medical community. "We can't let the patient know secret doctor stuff. Don't let the patient know how to read their own CPAP data. Don't use Auto CPAPs, we need to do everything with an in-lab sleep test. Don't bother to read the data the machines collect every night, do another sleep test. Don't listen to the patient's concerns and ideas about CPAP. etc. Don't let someone suggest that the XYZ problem has significant side effects and a poor success rate. Don't let someone suggest doing Y, because that might be dangerous. "

My biggest concern would be to make it clear that the site is paid for by the medical system, not a "patient's" organization. Many of us patients have been used and abused by the medical community and are justifiably concerned about the information that comes from them.

Make sure that it's clear who pays the bills on the site. Be clear about it in general, not just buried in the "about this site" info somewhere.

mrueschman wrote:I am (a small) part of the MyApnea.org project. It is a collaboration between sleep apnea researchers at Brigham and Women's Hospital and the American Sleep Apnea Association, among others. As mentioned earlier in the thread, the project is funded by the Patient-Centered Outcomes Research Institute (PCORI). You can read more about the sleep apnea network and other patient networks here: http://pcornet.org/patient-powered-rese ... sociation/

We are not a scam site ( ), though we are guilty of not getting our site up and running in a timely fashion. Hopefully our launch is on the near horizon, at which point we will welcome all-comers. Our ultimate goal is to add to the collection of useful web resources (like this forum) available to sleep apnea patients.

Hi, mrueschman. Thanks for your reply.

I don't want to turn you in to a spokesman for either AASA or MyApnea.org. I have no idea what your actual level of involvement is with either of these entities, and I have no desire to be unfair to either of them. Am I correct in assuming you are an OSA patient yourself? I discovered the AASA website before I found this forum, but chose to participate here because it seemed to be more active, and because after searching the AASA website, I couldn't figure out what they do. Perhaps you can enlighten me. The only information I can find on their site is that they're involved with the A.W.A.K.E. support groups, which don't seem to have been embraced with any great passion by the Apnea community. I searched in vain for a meeting group near me, and I live in Brooklyn, NY. Rather a high population area. I found there had been some meetings in the Bronx at one time, but not currently. Otherwise their site speaks of their commitment to reaching out to the undiagnosed, but they provide no information on how they do this, or how successful they've been. They've been in existence for 24 years. What have they been doing, and why don't they provide any specifics on their website? The link you provided describes the AASA as the only "patient-centric" effort in existence. If so, are they doing a good job?

As to the MyApnea.org effort, I found out about it through a pinned thread on their forum, but I had to go through several links to find anything useful about the project, and it came from a site unconnected to the AASA. I put my name down to receive further information when that becomes available, and I hope it proves to be a worthwhile effort, but why don't they make the information a little easier to find?