Respironics Users Group

Can't say our provocateur doesn't liven things up!

David

. . . and not necessarily a bad thing either, in that it sometimes forces clarification.

Guest,

I think you're taking Bill out of context.....you omitted his first sentence.

I didn't take it as being someone who physically takes the machines apart, but rather someone who could speak to the manufacturers on a technical basis (if necessary)......hardware, features, software, etc.

Actually, I'd also like to hear Johnny's opinions on this matter. COULD or WOULD it be beneficial (or fruitless) to address some of our needs, opinions, etc. directly to the manufacturers of these pieces of equipment (XPAPs, masks, etc.)?
I think it would be financially beneficial to the manufacturers to limit their production of XPAPs to fewer models......all of which collect sleep data. Eliminate the low-end machines that don't. Include features that would allow the users to see their nightly statistics.
Address to them the problems many have had with the EVIL DMEs, clueless sleep doctors, sleep clinics and the insurance providers and the shenanigans that they pull with the "sleep deprived".

I would personally like to see something like this go forward to see what king of response we would receive from them. I also think it should be an all-inclusive group to address any and all manufacturers.

<steps off soapbox>

Den

Den,

If I am reading you correctly, you are highlighting what appears to be a growing trend for xPAP users to want to take a greater role in their own therapy and the interpretation of their results.

It could be a reflection of our greater computer awareness but it has impressed me as to how many people here, even a few in their 70s, who have been willing to set up software and look to analyse their own data.

At the ver least, the number of otherwise non techie folk who use PCs to reach and participate in this board.

I believe the time is right for a pro-active consumer group that seeks assistance and good advice from the manufacturers.

To Bill, I had missed this thread prior to today. I will be more than happy to participate.

Cheers

DSM

dsm wrote:Den,

If I am reading you correctly, you are highlighting what appears to be a growing trend for xPAP users to want to take a greater role in their own therapy and the interpretation of their results.

It could be a reflection of our greater computer awareness but it has impressed me as to how many people here, even a few in their 70s, who have been willing to set up software and look to analyse their own data.

At the ver least, the number of otherwise non techie folk who use PCs to reach and participate in this board.

I believe the time is right for a pro-active consumer group that seeks assistance and good advice from the manufacturers.

To Bill, I had missed this thread prior to today. I will be more than happy to participate.

Cheers

DSM

Doug,

You've got it right!!!

I've been reading way too many of these sad stories for the last year and I think it's time sombody kicked some butt! These manufacturers have catered to the other "for profit" entities for all these years and the end-users have suffered greatly (when you factor in an almost 50% success/failure rate).

Den

Bill, as a user of a Respironics machine since October, 2003, I voted yes as I concur with so many of the "needed improvements" that I've seen posted on this board.

My only qualification is that I would prefer to maintain some degree of anonymity.

NightHawkeye wrote:It was intended jocularly.

My apologies NightHawkeye. I thougt you were serious.

Bill,

Thanks for taking the initiative, I hereby nominate you president pro tem of this fledgling society. All those opposed? OK, it's unanimous.

Next order of business: (other than "should we exist"), is the discussion still open as to the scope and purpose of what we're trying to accomplish? I see lots of potential for an independent and untainted consumer-oriented organization that performs real services (not unlike what goes on in this forum), that has credibility and some political clout. That is not to discount the engineering instincts expressed by some here. I too am fascinated by the technology and the need for improvements. I don't see enough traffic with engineering details to keep one major vendor interested in our "enlightened" opinions, if indeed they will even pretend to listen.

I can see a need that the ASA does not fill. Namely that they are "provider" driven, and not untainted. Are we SHOCKED to learn that... "By becoming a corporate sponsor, your organization and its products will be discovered by consumers from around the world. You will have repeat web exposure; much more effective than a one time/ one page ad in a journal." (from the ASA website. http://www.americansleepassociation.org ... ations.htm ). That is not to say that they are not "patient-oriented". Sheep are always welcome to a fleecing. THEY do provide a service, education, referrals, advertising, and a lot of good things that I don't mean to discount. My main complaint: they are not a patient-driven organization. And sometimes patient/provider interests diverge. Follow the money.

Also do we really want to be a Respironics-only group? That provides "focus", true. What about "them". We could adjourn, turn our hats around, and call the ResMed engineering advisory subcommittee to order. (Not unlike many of the interlocking corporate directorates that dominate the practice groups and facilities in a med ctr univ community).

Some of the issues that unite us are...

1. THE CRUMMY ROTTEN LOUSY SERVICE AFFORDED BY MANY PROVIDERS
2. Market distortions that deny the proper equipment and service to MANY.
2. Perceived defects/deficiencies and/or opportunities for improvements in the equipment, blowers, masks, etc. (That's what got this rolling).
3. Our collective experience in using/operating the equipment, gained largely from looking at masks for extended periods of time FROM THE INSIDE.
4. A genuine commitment to helping "newbies" and getting them started and solving problems and steering them to the right equipment and away from known problems, (and on and on...) FOR NO FINANCIAL GAIN OR VESTED INTEREST WHATSOEVER. (that cannot be said of other .org organizations offering advice)
5. Our commitment to first amendment rights when it comes to dispensing advice.
6. (not the end of the list by a long ways)

NEXT order of business might be to consider how we pay for all of this. More random thoughts...

1. Independent product evaluation/testing/certification. (does YOUR apap carry the RRUG/HUG/BUG seal of approval?)
2. Independent patient satisfaction surveys, of DMEs, clinics, online providers, insurance providers, etc. Reputable companies will pay for this type of information.
3. Performance-based referrals to clinics, physicians, DMEs, etc., (but UNLIKE 1-800-DENTIST, should not be based on advertising/sponsorship revenues). significant revenue potential.
4. Aggressively file for patents, license our collective ideas to those willing to pay. (You EEs have come up with some very good ideas. I bet the BIG-4 are fighting over some of these at the patent office as we speak, wanna bet?)
5. Solicit PAC dollars, and become a political force to address patient issues, non-partisanly.
6. Solicit state and federal grants to promote the technology and patient education and basic medical research on issues of apnea and the treatment thereof. (But only after we're really on a roll).
7. Create educational materials for patients, providers, family members, including books, pamphlets, videos, online resources, etc., with emphasis on keeping the patient's interest FIRST AND FOREMOST. How much of what's out there is industry-sponsored, pharmaceutically sponsored, AMA sponsored, ASA-sponsored, DME-sponsored. This could be done profitably without selling our soul or abandoning the "end-user perspective".

OK Bill, I've babbled long enuf. You're the president, I shouldn't be speaking out of turn. Sorry.

Cordially,

-Ric

drat, guested again.

-r

I didn't vote ........ yet.
1. Would the group be open to any and all

2. Remember the trolling guests, so would you have to be registered to join

3. It would seem that this would lend itself to be more of a lead in for a more technical discussion than say a newby discussion. If yes fine but that would limit it to a few , but if no what would be the point since the present forum seems to work just fine:?: Sounds like more of a reinventing of the wheel scenario. I see some advantages but I also see it appearing as an elitist group to the remainder of the forum no matter what the original intentions were.

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.

DVL,

I think your approach is both wise and sound.

The group needs to establish a 'Mission Statement' & 'Goals' that both make sense and appeal to those who see value in a possible direct channel to a manufacturer.


Some ideas on my part ...

I do believe it can and should only be open to members and that anyone
wanting to join basically only needs to agree to the mission statement & goals

That the group would only be of any use if it can obtain a direct channel to a manufacturer

That the group has some mechanism in place to prevent counter productive requests/demands being forwarded to a manufacturer, i.e. this could be controlled by way of a small committee of say 6 & with a quorum of 4 of the 6 for approvals of adopting any particular matter to take up with the manufacturer.

By further explanation, if the group is seen to or tries to 'beat up' a manufacturer, it will get squashed very quickly. The group should start off as a conduit for the mutually pro-active exchange of information with a manufacturer. Some may believe we will never achieve this - I believe it is possible and well worth trying and the groups Mission & Goals will go along way to establishing its credibility.

As an inducement to a manufacturer to connect with the group, I believe we would need to offer the manufacturer some support mechanism such as a pool of approved evaluators or testers should that be of interest to them. There is bound to be something they would value that we could offer.

The whole proposition has to be structured and put forward as a win win win proposition (we win, they win, everyone wins).

The more of us that join the more interest they will show in what we have to offer.

DSM

Some further thoughts re Users Group(s)

I believe we could set up 2 sub groups

1) Respironics Users Group

2) Resmed Users Group

I am willing take on a primary role in one or the other group (allows us to share responsibility).

Because Resmed's worldwide head office is only kms from where I live & work I could be the better choice to interface with them.

I am not sure where Respironics head office (& scientists) are.

One other issue the groups could include in their mission, is to get the most accurate information on how their products function (allowing that they won't give away trade secrets). One reason I say this is that to me there is much misinformation put forward on this board by some about how some products work & what their actual achievable design goals are vs wishful thinking goals.

Last night I at last located a detailed description by one manufacturer as to how their sensor based AUTO machines work & what they do when an OSA is detected. This topic has been the fuel for some quite heated exchanges at cpaptalk.

I will publish this description at some time in the future and I believe it can be a yardstick for getting other manufacturers plus this one, to come forward and advise us as to what changes have been added to their machines as they evolve. One thing I believe we can all agree on is that there are many advances taking place in some aspects of xPAP technology. Some obvious (the mechanical ones) some not so obvious (algorithms).

Accurate understandings of what the machines are really capable of is important to many of us.


DSM

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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, resmed, auto

dsm wrote:I am not sure where Respironics head office (& scientists) are.

Here's their new/additional/global (?) website.
Anybody live near Pittsburgh? Murrysville is where their corporate headquarters are located.

http://global.respironics.com/Default.asp

http://global.respironics.com/locations.asp

http://global.respironics.com/corporategovernance.asp


Den

Some more thoughts on guidelines for matters these groups could take up.

In light of some of the heated exchanges over what constitutes a fault in a machine, I believe we can develop a set of guidelines that should satisfy all sides of the debate, by this I am meaning ...


1) That members of the User's groups, agree that the User Group via the committee, will establish some simple definitions of problems on machines & masks etc:

e.g. The committee endorses the following definitions that can be applied to perceived problems when a problem (or issue) is submitted to the group by a member

1) perceived Problem (a problem that is not accepted as proven by the committee but is perceived by a member to be a problem)

2) Possible Problem (a problem that the committee, has accepted to be referred to the manufacturer on behalf of the group)

3) Acknowledged Problem (one that has been acknowledged by the manufacturer as a problem. They may agree to fix it or just acknowledge it)

These are just thoughts but should go a long way to helping us establish a common language we can share with people of all perspectives. Such definitions are very generous & should help remove any emotive element from discussions.

What do others think ?

DSM

DSM,

I'm glad you're putting your mind to this issue. The service you suggest, collecting, reviewing, scoring perceived problems and design issues seems like a good thing. Before this collective effort gets too formalized, I would suggest somebody approach the respective R&D departments and learn if this will be well-received, how they operate, and if there is in fact some "win-win" territory, as you say. They may even have some input on how this should operate.

-ric