CPAP Education Outreach

49er wrote:

kaiasgram wrote: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.

I got a note from Tracy Nasca saying that they were having "problems with the hosting company" or something like that.

which doesn't really make sense to me, since it only takes like an hour to throw up a new system on a vps provider.

palerider wrote:

49er wrote:

kaiasgram wrote: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.

I got a note from Tracy Nasca saying that they were having "problems with the hosting company" or something like that.

which doesn't really make sense to me, since it only takes like an hour to throw up a new system on a vps provider.

Thanks for the update PR. It sounds like ASAA needs to hire you as a tech consultant.

49er wrote:

palerider wrote:

49er wrote:

kaiasgram wrote: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.

I got a note from Tracy Nasca saying that they were having "problems with the hosting company" or something like that.

which doesn't really make sense to me, since it only takes like an hour to throw up a new system on a vps provider.

Thanks for the update PR. It sounds like ASAA needs to hire you as a tech consultant.

I'd at least have a forum up and running, even if it didn't have the previous content... (which might be a blessing... fresh start and all that)

Julie wrote: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.

Well, yes, I do think vitally important information is being hidden in some cases, but that's a relatively small part of the picture. My main point is that the statistics are startling. Not to belabor the point, but 20% of the country has OSA and 90% of them don't know it? Wow. Most of these people are probably not talking to their doctors about their sleep problems in the first place.

I'm not sure what you mean by soliciting, and I'm not sure why that would be unethical. What I'm suggesting is an education campaign to encourage people to seek medical help. At the same time, to share tips about the potential pitfalls of seeking such treatment. Again, experienced patients have useful knowledge to share about these pitfalls. Why is that unethical? I've been in touch with the CDC and a Cornell University program which has something to do with outreach efforts, but I'm not exactly sure what. So far neither has replied to me. The ASAA lists outreach as one of their primary functions, but as far as I can tell they've done nothing along those lines. Will it still be a priority with their new focus? It doesn't really matter. 20-30 million people need to be alerted that they may have a life threatening condition and be unaware of it. One organization cannot possibly hope to reach them all. There is room for a lot of people to participate in educational outreach. My point is that the patients here on this forum have a unique perspective and unique knowledge and can perform a service for these people that no one else can. I would also like to involve medical experts. Dr. Stephen Park would be an ideal participant in such an effort. I don't want to provide "scare" material for the purpose of bilking people. A broad spectrum of talents would be needed to make such an effort work.

As far as educating doctors goes, well sure, ultimately that would be a worthy goal, but it would be necessary to build an organization in order to make something like that possible. Ideally, once you have such an organization, you could exert an influence on all the diverse players in the sleep medicine field: doctors, insurance companies, DMEs, equipment manufacturers. The question is, how do you build such an organization? Doing outreach is one way. You could serve two purposes, to inform people thus reducing the number of the undiagnosed and at the same time build up your organization. A reduction from 90% to 89% would involve a hell of a lot of people. There are a lot of natural alliances that you could draw on in this effort. The fact is that no one in the sleep medicine field would fail to benefit from this. Doctors would get more patients, insurance companies would save money on the reduction in heart attacks and strokes etc. that would result from better patient knowledge, equipment companies and DMEs would see bigger profits.

As I stated in my first post, step one is building a team to evolve a workable approach. Then develop a crowdsourcing presentation and try to raise money to get an initial outreach off the ground. After that, you'd need to make it self-sustaining. I think there's a lot of parallels to AIDS, including the stigma associated with the condition and the fact that patients had to put together grassroots efforts in order to produce meaningful change.

The minute you formalize what we do at this forum, the liabilities incur. Then it has to be moderated, and most of the free exchange of information will be quashed. That's the reality in our litigious society.

I did get a referral to this forum from the sleep lab tech I worked with at Kaiser. But I'm sure that's the exception, not the rule. There is a dedicated forum site for sleep lab techs, and they HATE us . They think the info we give is bad and bunk. They would like to see us gone and occasionally there's a troll from their ranks who tries to say as much. And I've never come across it, but I'm sure there's a place for DME's to gnash their teeth about us as well. Too bad, because I think there would be a really good alliance, if they were more intersted in patient quality care than their own self-importance.

We can only help the ones who find their way here. It is sad that it's often too late for people who need better than bricks to ensure their success.

Wulfman... wrote: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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I'm not talking about already diagnosed patients, I'm talking about the undiagnosed. I'm talking about a campaign to inform the general public about some vitally important facts:

1- How widespread the condition is. The CDC and NIH's own statistics are all you'd need to tout.
2- Untreated sleep apnea is responsible for a lot of weary driving accidents. Billions of dollars are involved in this particular aspect of the problem. It also transcends the individual paradigm. People without OSA are as much at risk from traffic fatalities as those who do suffer from OSA but who don't know it.
3- What the warning signs are. "Do You Have Any of These Potential Indicators?"

You'd design the outreach around these indicators. There are lists of people with these indicators that you can use. Again, there are a lot of natural alliances that can be used to help. Diabetes, heart disease, etc., the organizations built around these conditions are huge and they have extensive lists. What exists for OSA? Not much, so far. There's still a vast pool of people who don't know what they've got. You could do a hell of a lot of potential good reaching out to them. Unfortunately there's less you can do for those who are already in the system and are getting less than optimal treatment. Like you said, the trick is to get to them before they stumble into any of the pitfalls.

TechJungle wrote:

Wulfman... wrote:

TechJungle wrote: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

Myapnea.org is a completely different kind of effort. It's a research project which uses already diagnosed patients currently receiving treatment.

Janknitz wrote:The minute you formalize what we do at this forum, the liabilities incur. Then it has to be moderated, and most of the free exchange of information will be quashed. That's the reality in our litigious society.

I did get a referral to this forum from the sleep lab tech I worked with at Kaiser. But I'm sure that's the exception, not the rule. There is a dedicated forum site for sleep lab techs, and they HATE us . They think the info we give is bad and bunk. They would like to see us gone and occasionally there's a troll from their ranks who tries to say as much. And I've never come across it, but I'm sure there's a place for DME's to gnash their teeth about us as well. Too bad, because I think there would be a really good alliance, if they were more intersted in patient quality care than their own self-importance.

We can only help the ones who find their way here. It is sad that it's often too late for people who need better than bricks to ensure their success.

I ain't saying it would be easy, and unfortunately you're right, there will be people who would benefit from an alliance who will be adversarial. That's why building a team and a really carefully crafted strategy is so important. There's a lot of potential talent out there though, in OSA patient-land. Lawyers, doctors, programmers, etc., who's knowledge would need to be harnessed. If it can be done, it will take some time and a lot of effort.

One solution that comes to mind is that we as individuals or groups of individuals within a certain area should start a support group, then publicize it, perhaps let doctors know that there is a support group for those who've just been diagnosed and they can give patients that info in case they want to take advantage of it. It takes a good leader to get something like this going.

Within a week after starting therapy last winter, I scoured the area and called my clinic looking for a support group... the closest one to me is about 60 miles away on a two lane highway, and winter in Minnesota is not the time to be driving on that road.

Human interest stories in the newspaper can publicize the pitfalls of undiagnosed OSA, as well as the difficulties of adjusting to cpap use.. anybody who has clout good probably get your local paper's medical writers to do a story.

library lady wrote:One solution that comes to mind is that we as individuals or groups of individuals within a certain area should start a support group, then publicize it, perhaps let doctors know that there is a support group for those who've just been diagnosed and they can give patients that info in case they want to take advantage of it. It takes a good leader to get something like this going.

Within a week after starting therapy last winter, I scoured the area and called my clinic looking for a support group... the closest one to me is about 60 miles away on a two lane highway, and winter in Minnesota is not the time to be driving on that road.

Human interest stories in the newspaper can publicize the pitfalls of undiagnosed OSA, as well as the difficulties of adjusting to cpap use.. anybody who has clout good probably get your local paper's medical writers to do a story.

That was one of the main activities of ASAA, the AWAKE groups. It apparently never took off, and last I heard a part of their current reorganization efforts involves trying to revive that network. As Den pointed out though, it's important to get this information into people's hands before they seek treatment. That's part of the reason I think an outreach program could be of benefit to people.

Cpaptalk IS a support group, and even though its formal mandate's about Cpap, the number of issues brought up here is huge.

I think what would be needed are the kinds of little posters stuck in MD's waiting rooms for patients to look at while waiting... preferably with Uncle Sam pointing to them saying 'This means YOU". following a list of symptoms.

Otherwise, just how would you really get to people who are likely going to be in denial at first anyhow? The ones who feel lousy enough to see doctors go because they feel lousy, not because they learned about OSA from somewhere, or at least only some of them had, but would have ignored the info until they felt lousy, then gone to the doctor who probably took months of testing before twigging to possible OSA whatever the patient said... there are plenty of stories here about patients requesting sleep studies and being turned down for months or more til finally the doctor gave up.

Julie wrote:Cpaptalk IS a support group, and even though its formal mandate's about Cpap, the number of issues brought up here is huge.

I think what would be needed are the kinds of little posters stuck in MD's waiting rooms for patients to look at while waiting... preferably with Uncle Sam pointing to them saying 'This means YOU". following a list of symptoms.

Otherwise, just how would you really get to people who are likely going to be in denial at first anyhow? The ones who feel lousy enough to see doctors go because they feel lousy, not because they learned about OSA from somewhere, or at least only some of them had, but would have ignored the info until they felt lousy, then gone to the doctor who probably took months of testing before twigging to possible OSA whatever the patient said... there are plenty of stories here about patients requesting sleep studies and being turned down for months or more til finally the doctor gave up.

How would you really get to people who are likely going to be in denial at first anyhow? An excellent question. IMO, the answer is education. Lay people can't educate doctors. They can't get posters into their offices telling people about the condition. There are efforts within the medical community to improve the knowledge and approach of doctors to this problem. What grassroots efforts can accomplish is educating other lay people about the situation. That's what ACT-UP was, and they seemed to have had a positive effect on improving the treatment of AIDS patients.

It's all about the message. "Hey moron, go to the doctor" probably won't do it. Something a bit more nuanced and clever? Maybe. I always think about seat belts. When I was a kid my parents resisted using seat belts. They didn't understand the need, and they were in denial. It took a public education campaign to set them straight. Commercials which showed the risks of not using seat belts. When it became clear that the downside outweighed the upside, people started to change their minds. Did it work for everyone? Of course not. Some people are still in denial about the value of seat belts. But that effort to educate people has saved countless lives.

I worked for several years for a company which did fund raising consultation for charities. My job was to prepare the spreadsheets which analyzed the results of prior fundraising and our fundraising. We were consistently able to improve their results. It's all about knowing how to craft the message. It's not easy, it's not guaranteed to succeed and it's not always safe. It is often worthwhile, though, to comfort the afflicted and afflict the comfortable. Will the medical establishment approve? Probably not. Is it worth doing anyway? I think so, but so far I seem to be alone in that opinion, so I certainly could be wrong.

The bottom line, for me, is that sleep apnea patients are woefully underrepresented. Whether you think charitable organizations are useless or not, why should other conditions, conditions which affect far fewer people, get so much more representation and sleep apnea receive so little? Why is sleep apnea deemed to not be worth the effort?

There is another side (or few). There may be the image thing of an older, fatter, snoring-with-mouth-open guy who people don't want to relate to. There's the mass of people who don't want to think about dying in their sleep or even on the road - other ways are more interesting, and being a sleepy dud (and not dude) is not sexy or cute, or courageous... raising money to make people aware of the seriousness is going to be hard. And I think lots of people don't even want to acknowledge that OSA exists... kind of like chronic fatigue, or fibro, etc. etc.

From the time of Charles Dickens, sleep apnea has been publicly linked to obesity, which has been ASSumed to be due to poor self-control, a CHARACTER FLAW. Wrong as this may be, the connection remains. It is easy to garner sympathy for sick children, dying mothers, and crippled soldiers, but people who cannot sleep and breathe at the same time, regardless of their (our) pain, are not receiving any sympathy, and support follows sympathy. Too many wish the world were simple, and in their infinite myopia, behave accordingly.

JQLewis wrote:

Julie wrote:Cpaptalk IS a support group, and even though its formal mandate's about Cpap, the number of issues brought up here is huge.

I think what would be needed are the kinds of little posters stuck in MD's waiting rooms for patients to look at while waiting... preferably with Uncle Sam pointing to them saying 'This means YOU". following a list of symptoms.

Otherwise, just how would you really get to people who are likely going to be in denial at first anyhow? The ones who feel lousy enough to see doctors go because they feel lousy, not because they learned about OSA from somewhere, or at least only some of them had, but would have ignored the info until they felt lousy, then gone to the doctor who probably took months of testing before twigging to possible OSA whatever the patient said... there are plenty of stories here about patients requesting sleep studies and being turned down for months or more til finally the doctor gave up.

How would you really get to people who are likely going to be in denial at first anyhow? An excellent question. IMO, the answer is education. Lay people can't educate doctors. They can't get posters into their offices telling people about the condition. There are efforts within the medical community to improve the knowledge and approach of doctors to this problem. What grassroots efforts can accomplish is educating other lay people about the situation. That's what ACT-UP was, and they seemed to have had a positive effect on improving the treatment of AIDS patients.

It's all about the message. "Hey moron, go to the doctor" probably won't do it. Something a bit more nuanced and clever? Maybe. I always think about seat belts. When I was a kid my parents resisted using seat belts. They didn't understand the need, and they were in denial. It took a public education campaign to set them straight. Commercials which showed the risks of not using seat belts. When it became clear that the downside outweighed the upside, people started to change their minds. Did it work for everyone? Of course not. Some people are still in denial about the value of seat belts. But that effort to educate people has saved countless lives.

I worked for several years for a company which did fund raising consultation for charities. My job was to prepare the spreadsheets which analyzed the results of prior fundraising and our fundraising. We were consistently able to improve their results. It's all about knowing how to craft the message. It's not easy, it's not guaranteed to succeed and it's not always safe. It is often worthwhile, though, to comfort the afflicted and afflict the comfortable. Will the medical establishment approve? Probably not. Is it worth doing anyway? I think so, but so far I seem to be alone in that opinion, so I certainly could be wrong.

The bottom line, for me, is that sleep apnea patients are woefully underrepresented. Whether you think charitable organizations are useless or not, why should other conditions, conditions which affect far fewer people, get so much more representation and sleep apnea receive so little? Why is sleep apnea deemed to not be worth the effort?

There are lots of entities which are trying to get the word out.
This is one of them:

http://www.reggiewhitefoundation.org/

One problem is that so many people are in denial. Heck, we've seen it here thousands of times......even AFTER they're diagnosed and have their equipment. They don't want to use it, they come up with all kinds of excuses not to use it, they think surgery or weight loss will "cure" them, and on and on........

As the stand-up comedian Ron White would say........"YOU CAN'T FIX STUPID!!!"


Den

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