Respironics Users Group

I think some very good ideas have been presented so far, and have only a few random thoughts of my own to offer:

1) Setting membership standards and committee membership standards may be putting the cart ahead of the horse a little, but since this has already come up in a somewhat agitated way, it might be good to determine these things in the very beginning. I personally favor a rotating committee membership, say four to six people who would be willing to participate for perhaps twelve months - a time period long enough to be useful, but not so long as to get stale.

2) It seems to me that the committee members would necessarily lose anonimity, although that wouldn't necessarily be apparent to regulars on this forum. I can't imagine any of the manufacturers willing to talk with someone who wasn't willing to provide their identity.

3) Such a group would be dependent on Johnny's forum to get started, I'm sure. I can't imagine it would have much success any other way. It strikes me as a win-win situation for Johnny, but I certainly don't have his vantage point. There may very well be good reasons that he would advise us against going forward. I, for one, certainly would not take issue with such a decision, as he is entitled to operate this forum in the manner he feels is best. (BTW, Johnny, your benevolent and gracious manner with this forum has been greatly appreciated.)

4) It seems to me that voting for committee members would require some controls to ensure the integrity of the process. The internet is such a wild place that not having controls for the voting seems like a recipe for disaster.

Those are my thoughts for now.

Regards,
Bill

Bill,

I'm not disagreeing with you, exactly. I think the "committee" part of what we're discussing could operate very well "offline" by email or other "electronic" means, without any special sponsorship or blessings from anyone.

One the other hand, data collection would resemble "business as usual" on the forum, people discussing problems, people asking questions, clarifying the issues, the "Committee" participating fully in the dialogue. That of course would incur the ongoing benevolence of our kind and gracious host, as you say.

-Ric

Ric wrote:I'm not disagreeing with you, exactly. I think the "committee" part of what we're discussing could operate very well "offline" by email or other "electronic" means, without any special sponsorship or blessings from anyone.

I agree with you, Ric. Never thought that the committee per se would want to operate "online". I was thinking of the full membership business activities, announcements, etc., being somewhat "online" as you've described.

Regards,
Bill

The sole purpose of having a committee in this instance is so that no one individual can dominate the setting of the purpose and goals of the user group.

Also the purpose for having a quorum of committee members (even if it is only 3 individuals out of a possible 5) is that any representations made in the name of the group, will have been agreed to by a quorum of the committee. (quorum being the min number of committee needed to make decisions in the name of the group).

As it stands, enough people seem willing to start this that I am willing to put some effort into making contact with these manufacturers. I thinks enough others are as well.

I will draft up an example of a letter I think might be useful in making contact. I will post it here & we can debate its merits.

If enough people see that a few activists are willing to do some of the basic leg work, and if we can start producing some basic results, then I am sure more people will be willing to sign up.

To have real impact the membership would need to be of real names, real addresses & real contact facilities (email id). The list doesn't have to be public (on the Internet it had better not be public )

Here is a possible sequence of steps on how to get this show on the road

1) Agree on a (say 3 person) steering committee to handle the startup -
to remain for say max 3 months then elections be held (perhaps endorse the existing 3-person committee or expand it to 5 or 6 ? )

2) Agree to a Mission Statement & group Goals (that can be done here)

3) Agree on a basic structure (3 person steering committee, Set a Mission statement, set at least 3 Goals, members (initially say 2 lists as suggested & further explained in the next point))

3) Recruit members: - establish a confidential membership list of the founding members who are willing to provide such info (perhaps a 2 tiered membership - list A being members who have provided identity details, list B being members who want to join but are not yet ready to pass personal info (even name/addr ) over at this time. Point being we want to know the numbers for each list.

4) Put together a letter to introduce the Group (preferably a Respironics sub-group and a Resmed sub-group at least, for starters). If the letter is accepted, keep it ready to send when the 3 person committee feel the time is right to send it.

5) Work out the best means of committee interaction & keeping the broader community of members & others here at cpaptalk informed of activity.

DSM

More thoughts

A meaningful name ?

Some initial ideas (hoping to inspire some more imaginitive ones )

Cpaptalk Respironics User's group (but ties us to cpaptalk).
Cpaptalk Resmed User's group

International Respironics User's Group (sounds impressive )
International Resmed User's Group

Internet Respiroinics Users Group (dunno ?)
Internet Resmed User's Group

Respironics xPAP User's Group
Resmed xPAP User's Group

Four-points xPAP User's Group (different - four points being the 4 points of the compass (global membership))
- Respironics Committee
- Resmed Comittee

DSM

Feeling unwelcome on this forum. It has been the best forum so far, with the best general info, but the focus is changing to one product company and since I use brand X apap the info may get too product specific here.

Though I do applaud your idea of better contact with manufacturers, but do they really care? I would like to see the end of manufacture of all plain cpaps.

No need to feel unwelcome, Another Guest. As others have suggested, this idea might very well encompass multiple manufacturers. Respironics merely seemed a useful focus point for discussion.

another guest wrote:Though I do applaud your idea of better contact with manufacturers, but do they really care? I would like to see the end of manufacture of all plain cpaps.

That is the crux of the problem. As a design engineer, I can assure you that the folks doing the actual engineering work do care. However, the focus of the companies is toward physicians and DME's, which are the entities the manufacturers regard as customers. The patient is not perceived by the manufacturers as the customer, as strange as that may seem.

A primary purpose of the group being discussed would be to influence changes beneficial to the patients. Making such changes would, of course, also be beneficial to the companies, because of increased patient acceptance/compliance with specific machines, a useful tool for marketing purposes. C-flex is marketed this way.

Having the manufacturers regard apnea patients as their primary customers would be one of the longer term objectives.

Regards,
Bill

Why am I skeptical that any of the equipment makers will be interested in our opinion, or even answer the phone? From what I can tell they continue to project distain for any form of contact with all lifeforms lower than "DME" (that would be US!, so it appears). And just when you were thinking that DMEs in general were the lowest (cpap.com and DME_guy excepted). An excerpt from yesterday's carefully choreographed conversation:

"A: The M Series is compatible with the newest version of Encore Pro software, v1.6i. Upgrades are provided free of charge to existing Encore customers. [cpaptalk.com Note: Upgrades require a username and password provided only to Sleep Lab and DME software users.]"

Why the morbid fear of "patient contact"? Probably nothing to do with "death cooties". Just a money thing. Patients are not viewed as customers. DMEs and Sleep Labs are.

harikarishimari wrote:Why am I skeptical that any of the equipment makers will be interested in our opinion, or even answer the phone? From what I can tell they continue to project distain for any form of contact with all lifeforms lower than "DME" (that would be US!, so it appears).
<snip>

Hari,

You are not alone in your thinking. By any means. But, are you will to have a go at changing this situation ?.

A few of us are ready to give it a try. A very good try.

What we need to 'have our go' is at least the basics of an org (pretty much as outlined earlier), with a respectable membership, and the polite determination with the manufacturers, to see just how we can change this situation for the better and for us.

DSM

dsm wrote: ...are you willing to have a go at changing this situation? A few of us are ready to give it a try. A very good try.

Yes, what you are doing is a good thing, I am happy this is happening! -hks

This seems incredibly premature. I'd suggest you table these discussions here on the forum until you've established a dialogue with a manufacturer. Don't get your hopes up.

It's like we're a bunch of kids excited to start our own club, but we're wasting our breath if we expect Resmed or Respironics to respond to us.

dsm wrote: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)

"a problem that is not accepted as proven by the committee"

With all due respect, who do you think you are? The members of this proposed committee would not have any greater access, resources, intelligence, or insight than any non-committee members.

No one much cares if 1 or 2 or 3 or 4 or 5 or 6 specific people who hold themselves in higher regard have decided to define our "problems" and "accept them" (or not) "as proven." You haven't the right to make that determination for anyone but yourself, and your opinion is only your opinion.

dsm wrote:Here is a possible sequence of steps on how to get this show on the road

1) Agree on a (say 3 person) steering committee to handle the startup -
to remain for say max 3 months then elections be held (perhaps endorse the existing 3-person committee or expand it to 5 or 6 ? )

2) Agree to a Mission Statement & group Goals (that can be done here)

3) Agree on a basic structure (3 person steering committee, Set a Mission statement, set at least 3 Goals, members (initially say 2 lists as suggested & further explained in the next point))

3) Recruit members: - establish a confidential membership list of the founding members who are willing to provide such info (perhaps a 2 tiered membership - list A being members who have provided identity details, list B being members who want to join but are not yet ready to pass personal info (even name/addr ) over at this time. Point being we want to know the numbers for each list.

4) Put together a letter to introduce the Group (preferably a Respironics sub-group and a Resmed sub-group at least, for starters). If the letter is accepted, keep it ready to send when the 3 person committee feel the time is right to send it.

5) Work out the best means of committee interaction & keeping the broader community of members & others here at cpaptalk informed of activity.

Are you serious? You speak of elections, mission statements, goals and membership standards for your proposed committee. Don't you think you're getting a bit carried away?

I'd suggest you move this discussion off the forum and communicate via personal email regarding the formation of this elite committee, and leave this forum whole.

harikarishimari wrote:Why am I skeptical that any of the equipment makers will be interested in our opinion, or even answer the phone? From what I can tell they continue to project distain for any form of contact with all lifeforms lower than "DME" (that would be US!, so it appears).

It is naive to think it will ever happen.

Guest wrote:I'd suggest you move this discussion off the forum and communicate via personal email regarding the formation of this elite committee, and leave this forum whole.

Thank you for exposing your agenda, Guest. I fail to see how this effort is any threat to you as an apnea sufferer. Are you suggesting that somehow the enthusiasm displayed for this effort will somehow cause rancor and division within this forum? I would suggest to you that the exact opposite is true instead.

As for whether or not the manufacturers will discuss matters with the group, your projection is also incorrect. The question is not whether a manufacturer will discuss matters, but rather is how much detail a particular manufacturer will be willing to discuss. Part of this simply involves the size of a group, part of it involves the personalities of the individuals, and part of it is just circumstances and dumb luck.

How successful will the effort be? Time will tell.

One thing we do know for sure though: "Ya don't ask, ya don't get."

Regards,
Bill

I see this effort going forward until it hits a block wall. Who knows where this will lead. I don't see quashing the discussion just because it MIGHT hit a block wall. And if it does, REGROUP. I also don't see anything elitist going on with this thread. Remind me, who is worried/threatened by all this? And why? I can't even imagine. This seems like the PERFECT place to discuss this. (Did somebody mistake this for talkabout?) HKS expressed skepticism and enthusiasm, almost in the same breath. I can't disagree with what she said. I'm not sure I will join "The Club", as you say. But I will sure support it! Welcome to the internet and the information age. The revolution has begun. Things are different now.

Cordially,

-Ric

Well, I really can't wait to see the look on the collective face of Respironics when they see all the copies of their software around and say, "Wow, that's great, where'd you get them? Let's get you all registered right away!"

Oh yeah, forgot about that little detail, let's see who wants to join up now.

[quote="Anonymous"]Well, I really can't wait to see the look on the collective face of Respironics when they see all the copies of their software around and say, "Wow, that's great, where'd you get them? Let's get you all registered right away!"

Oh yeah, forgot about that little detail, let's see who wants to join up now.