Respironics Users Group

[unclebob]

Sorry,

The above post was me. Thought for sure I was logged in.

Bob F

[dsm]

Bob,

You raise some very helpful points and they help define focus

1) This isn't about just 1 manufacturer.

2) This is about users of xPAP and xPAP related equipment

3) The group's interaction is multiple
- With its members
- With its potential members
- With manufacturers
- With the medical profession
- With DMEs
- etc:

4) The group would achieve another valuable goal by reaching out to people who are still ignorant of xPAP therapy.
- A general awareness education sub-group

5) I like the SWS suggestion of a group that is capable of publishing a professional quality annual report that is a state of the nation adress on the main xPAP issues the org is dealing with. That is smart thinking.

We all realise Rome wasn't built in a day, but having well defined goals and a well thought out strategy to achieve them is paramount

The above points are further areas that would make a Cpap Users Group a valuable organisation.

In the end it will boil down to energetic people (super charged on xPAP & O2) with a plan, who will help get and keep the show rolling along.

It is pretty common for organisations to get started with lots of enthusiasm only to crumble under the lofty weigh of their own goals due to no substance. What makes me believe we can make a difference is that most of us are old-timers who have been around a while & are best likely to know how to get things done & perhaps better able to organize ourselves into workable cells. In reality we have nothing to lose but a lot to gain.

DSM

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[Guest]

i too!

[dsm]

Anon
>>
That's the biggest pile of convoluted nonsense I've ever heard.

Rationalize all you want, software piracy is exactly that.

Regardless, you don't need to convince me, you need to convince Respironics and the SIIA anti-piracy group.

And I find it appalling that you praise Johnny for letting you use his site, and then illegally pass this stuff around for free when Johnny (your host) makes his living selling this stuff. How do you rationalize that?

You're a hypocritical boor.
<<


Please can you explain what Encore Pro has got to do with us forming an International Cpap Users Group ?

Please go start your own gripe thread elsewhere & please don't taint us with your odium or your anonymous and unrelated rants.

DSM

[NightHawkeye]

SWS, thank you for your well considered comments and insights. They provide additional focus for this effort.

There are well-intended patient advocacy organizations that run under the auspices of researchers, health care providers, manufacturers, and DME providers. However, to my knowledge there are no patient advocacy groups that are purely driven by the patients and purely for the purpose of benefiting the patients. The other advocacy organizations all have “mutually beneficial” arrangements that in my opinion leave the vast voids that are presently unaddressed. The present system is clearly broken, and the present system clearly lacks an organized and effective feedback mechanism that is driven purely by patients’ interests. How many patients currently feel alienated by the system? How many patients feel as if their common/universal complaints are completely unheard? There is no effective patient feedback mechanism in the present system. If there was, many of these incessantly recurring problems that are presently outstanding would have been fixed over the years.

Exactly how to engage the system is, of course, critical. I agree with many of the sentiments expressed about the need for changes throughout the healthcare system, but I believe that our focus should remain on working with the equipment manufacturers. Clearly, it is in their immediate best interests to provide equipment which provides effective therapy with as few issues as possible.

Trying to engage the entire healthcare system strikes me as an effort doomed to failure. For that reason, I recommend we avoid taking that approach. Sadly, the physician's union (aka AMA) has a rich history of quashing efforts which directly challenge its members. As you have already pointed out, SWS, there are plenty of groups within the medical community which can effect change when motivated to do so. Since many physicians also have sleep apnea, it seems likely that some of them may visit here from time to time. Many physicians are motivated as much by wanting to help their patients as by money, so it seems likely that if our group here merely continues on its present path, some spill-over into that arena will naturally occur without direct confrontation.

Staying focused on interacting with equipment manufacturers is perhaps the most likely path for success here. This is not to exclude other interactions if opportunities present themselves, but striking out in all directions at once will simply dissipate the collective energies, without much hope of achieving a positive result.

Regards,
Bill

[Guest]

Exactly how to engage the system is, of course, critical. I agree with many of the sentiments expressed about the need for changes throughout the healthcare system, but I believe that our focus should remain on working with the equipment manufacturers.

I think that is very astute, Bill. Exactly how to engage the system is the question, but I'm not so sure that the focus should be on working with the equipment manufacturers in the effort to form a patient advocacy group. I believe placing the focus on an attempt to work with the equipment manufacturers is an exercise in futility. They have no intere$t in speaking to the end user. They know where their bread is buttered and it's at the DME level. Remember, we are a tiny fraction of a percentage of XPAP users here at cpaptalk. We are strong in our convictions and perhaps some of the best educated and most vocal users out there, but we are nothing to Resmed or Respironics. I think it is highly unlikely our patient advocacy group would ever be condoned, promoted, reinforced or even responded to by the XPAP manufacturers. I think focusing on them will get us nowhere fast. Has anybody ever gotten a response from them? While we attempt to start up a patient advocacy group, we could continually try to establish a dialogue with the manufacturers, but concentrating the focus elsewhere would probably be more productive than waiting for the manufacturers to acknowledge our existence.

I think our time and efforts would be better utilized in almost any other direction than attempting to get the manufacturers to work with us. Until (and if) we become a formidable enough force to be reckoned with, they won't even dignify our correspondence with a reply. They never have.

How about patient education? Printed material describing our rights? Think of all the times people have come here over the past 2 years and said, "If only I'd known at the beginning what I know now." How do we reach those people? If we had printed information available, would sleep labs and doctors pass our information along, or are our examples of taking our treatment into our own hands going to preclude us from getting support from them too? We advocate using APAPs, adjusting our own pressure and utilizing software to assess treatment efficacy. What group (or individual) in our chain of contacts over the course of our diagnosis and prescribed treatment is going to forward our material on to the patient? If no one in that "chain" is willing to pass our information along, how can we publicly disseminate it? Does anybody have press, radio or television contacts? How will we raise money to produce our information for the media?

I don't have the answers. (Obviously!) It's hard to know how to proceed, but I still contend placing the focus on working with the equipment manufacturers would be the least possible productive place to begin. Just my opinion.

[NightHawkeye]

I don't have the answers. (Obviously!) It's hard to know how to proceed, but I still contend placing the focus on working with the equipment manufacturers would be the least possible productive place to begin. Just my opinion.

Interesting and well thought out post, Guest. You've made some very clear arguments which I hope will foster further discussion on their merits.

Regards,
Bill

[DSM-Guest]

Re who to engage.

If we don't engage the equip manufacturers in some manner, why would anyone bother to start this org & put effort into it ?

I envisage that our 1st step as a new group, would be to seek information from manufacturers that is particularly helpful to our members and the xPAP community at large.

There are many questions I have in regard to general aspects of how each company's products work and what combinations of equipment they endorse.

One of the benefits of a non-aligned international users group, is as a central repository of useful information about products about their use and about common issues xPAP users come up against. Where we differ from other organizations would be our scope and that we are a consumer advocacy group.

If our roles was merely to set up a discussion forum and debate among ourselves, we would be dead in the water before we even started. That would only last so long then likely peter out.

To be viable we have to offer some value to our members and we have to be able to offer some use to manufacturers. The later can be as simple as requesting information that is important to members. I would be very very surprised if all manufacturers saw fit to tell a users group to 'go away' when what it is doing is requesting helpful information and offering to provide feedback.

So it is clear to me, a number of steps need to be taken just to get going.

- Set up a website that becomes the openly accessed repository of xPAP related data. We can evolve the categories based on who is willing to pad them out.

- Establish our Mission & Goals and place them on the web site

- set up a mechanism for receiving data and information to be made available through the site

The above would get the org established and allow it to grow from that. Having a website as a repository of information is the minimum we need apart from the organizers and the Mission/Goals statements.

DSM

[wading thru the muck!]

I envisage that our 1st step as a new group, would be to seek information from manufacturers that is particularly helpful to our members and the xPAP community at large.

IMHO, this is the key. If "we" provide valuable info and help that is not easily accessed elsewhere, the membership will grow. With a large membership will come influence with the manufacturers. This will be no small undertaking. As proof of that, I'll point to what Johnny & Co. have done with cpap.com. Although they are marketing the most comprehensive collection of equipment available at heavily discounted prices their influence on the total market is still small and thus their influence on the manufacturers is certainly not enough to affect major change... other than a nagging desire by some in the industry to make them go away. LOL!

One area of service that comes to mind and would be of immense value to many folks, would be to open a meaningful dialogue with insurance companies in an effort to foster better cooperation in allowing end users to purchase their equipment from the vendor that provides the best value. There is a huge upside for both parties in accomplishing this task... which is always helpful in successfully achieving any goal.

A lot of good ideas have been floating around this thread. Keep 'em come'n.

[Offerocker]

WOW
Although I didn't read EVERY post on EVERY page, I am extremely impressed: 1) With the Initiative, ability to communicate, THINK, and DEVELOP what has been proposed.
Likewise, I am shocked at the ignorance and stupidity of some entries, one of which is:

As interesting as it sounds, I will sit on the fence until the group is better defined with what it wants to achieve, goals, requirements, membership and accessibility

. (i.e., someone else do the work, and if it benefits me, then MAYBE I'll start to think about it). Other quotes made me as sick, in their misinterpretation (or insecurities).

I am definitely IN. I support what I've been reading as supremely important, timely, and just plain imperative.
I am not a chemist nor an engineer. I'm probably more a student of 'logic' and proponent of honesty and a level playing field.

Didn't Ralph Nader start out this way? One person did so much for so many, yet the first thing the big guys did was to try & find ANY 'dirt' on the guy, in order to 'quiet him' or disgrace him or his power in the Public's eye.

You're doing it right, and for the right reasons. I prefer the word 'International' be included in the name; Apnea knows no boundaries.

I still have some good years left to contribute, and lots of years of experience behind me.

I admire what's being started - it HAS started! Put on your calendar the date of that first message, and someday it will be in the history books. And I admire the contributors and their talents - very impressed. I forsee success. I'll swab the decks of this boat until it has sailed so long that it's no longer needed, and put to dry-dock. Now, that's a GOAL.

Thanks for listening. Now, don't waste time responding to those quak-pots.

[dsm]

Offerocker - succinct and very much to the point

I luv ya



DSM

[Offerocker]

I Luv Ya TOO - All of you

I foresee a small group starting this, then soliciting experienced information from other members who have not volunteered.

I think the mention of involving the INSURANCE COMPANIES is EXCELLENT !

WadingThruTheMuck:

One area of service that comes to mind and would be of immense value to many folks, would be to open a meaningful dialogue with insurance companies in an effort to foster better cooperation in allowing end users to purchase their equipment from the vendor that provides the best value. There is a huge upside for both parties in accomplishing this task... which is always helpful in successfully achieving any goal.

Had I conferred with my insurance company/companies, I would have started out with the necessary knowledge of the RULES and REGULATIONS which bind me. I must follow their rules, but, unfortunately, being naive and trusting still at this late date, I semi-trusted the doctors, lab personnel, and the DME. I ALSO "should have" done more research on the available DME's in my area. I called three, and relied solely upon how long it took them to answer the phone, courtesy, and availability of information. I did NOT know whether or not that information was VALID.

I have a doctor's 'impressions' re my study FROM THE DME, (believe it or not, upon my request); it states that I am to have a pulse-ox study done. (news to me!) Of course, it doesn't say 'when', and apparently that annotation was not strong enough for the DME to follow-through on information to which she was privy. Not her job, OK, but she's the one w/the pulse-ox, and it just could show that I need more equipment from them??? I've now learned to get a copy of every piece of paper from every office I exit, and have my internist receive 1st copy.

Each statement from my insurance company has a notice imprinted: Notify us if you suspect any errors or duplicate submissions (sic). So, are they wanting us to work WITH them? Only for their benefit maybe, but it can be used to open the door to our having them help us.

I'd like to suggest that we be diligent (those of us still 'renting') in reading our statements to ensure that the evil-dme's aren't screwing the insurance companies and us.

Again, widest-possible dissemination of information geared to newly-diagnosed Apnea persons may be our most-successful, long-range goal. This information needs to be part ot the medical research, insurance booklets, Internet searches, etc. - BEFORE one BEGINS treatment. I realize there are necessarily other routes we must take in order to REACH that goal. IMHO, we're going to need to multi-task in many different directions (contacts) in order to have complete success. After reading that, I realize it is all-too-obvious. Sorry, just thinking out loud. At least I'm thinking, eh? I'll try to make mine productive, even if from left field at times, as long as you bear with me.

Hmmm - adding a note here: It just dawned on me why the DME states she needs a Rx for an overnight pulse-ox: To charge the insurance company, I believe.

[NightHawkeye]

Hmmm - adding a note here: It just dawned on me why the DME states she needs a Rx for an overnight pulse-ox: To charge the insurance company, I believe.

I could be wrong, but I doubt that your DME intends to charge for the overnight pulse-ox. Other folks have written that DME's often provide the pulse-ox free of charge. I expect it's just a policy decision on your DME's part. You might ask them though. Who knows, what with it being Monday morning and all, somebody there might even be in a good mood this morning.

Of course, then again they might have been cowering all weekend, looking for a new line of work, afraid of what mysterious fate might befall them if they should continue working for the evil DME . . .

Regards,
Bill

[Wulfman]

Kathleen,

The Pulse-Ox is considered a "medical device" and therefore needs an Rx to be used. However, there are NO insurance codes for them to use to charge your insurance.....and therefore it is "free".

Den

[NightHawkeye]

Just a few comments in regards to recent points expressed:

Insurance Companies
It would appear that our own personal interests and the financial interests of the big insurance companies are aligned to a great extent. I do have to wonder how one might go about establishing a productive dialogue with them though. I do know that some insurance companies have internal groups which are focused on implementing novel cost saving measures, so perhaps that would be a place to start, particularly if we can put together a convincing story which shows how they can save money. The story, of course, would need to include convincing medical studies to support any suggestions made.

Interacting with insurance companies certainly seems like a fertile avenue worth exploring.

Dissemination of Information
I certainly agree with the need to disseminate information, however, this is a delicate area which needs to be handled with extreme caution. Expressing opinions, as we do here, is one thing, but an organization does not have that luxury. We would certainly be free to provide pamphlets and product brochures, and this probably should be the focus initially. If, however, we stray into the arena of providing consumer information regarding treatment of apnea, particularly if it involves cost saving measures, then that would threaten some monied interests, and would probably constitute sufficient grounds for the physicians' union (aka AMA) to shut the group down.

However, the good aspect of this is that it forces focus on realizable objectives. It strikes me that the group would be free to provide specific hardware recommendations based on group preferences. Fortunately, as many here have discovered (some to their dismay), physicians are generally unaware of sleep apnea hardware capabilities, other than in very general terms. This is a fertile area which does greatly affect compliance, and one about which the group should be free to indicate preferences.

Anyway, just a few thoughts this morning.

Regards,
Bill