An Open Note regarding Integrity

GoofyUT · Post by **GoofyUT** » Sun Sep 17, 2006 11:30 am

I feel compelled to stand up in support of DSM. he has been a steadfast member of this forum and has posted SO MUCH valuable information and has developed SO MANY resources valuable to us all!!

He has drawn some criticism regarding a question that he has, appropriately I believe, raised regarding the possibility of "vested interests" amongst some who place posts advocating the purchase and use of one particular brand of equipment here. I will stand next to DSM in stating that I share his same concerns.

This forum, while unquestionably valuable to the larger community of xPAP and SDB patients and their families, is after all, sponsored and moderated by a retailer of xPAP equipment and supplies. The fact that they have a vested interest in selling equipment is patent and unquestioned. To the extent that they may have a vested interest in selling a particular brand of such equipment for contractual or other reasons should also be unquestioned as such arrangements are a normal part of the world of retail sales.

However, the almost monolithic adoration of Respironics equipment as represented by the posts of many of the users here, is worrisome to me. In my six months or so of participation in this forum, I couldn't help but notice that posts in support of other manufacturer's equipment, most particularly ResMed, are met with torrents of derision. At the same time, adverse comments about Respironics gear are similarly met with incendiary flames.

Now, we've all speculated openly on this forum from time to time, that manufacturer's representatives may frequently masquerade on this forum as users and give posts biased toward enhancing sales of the gear they represent. And, i take those posts with a grain of salt. I expect them , and I believe above all else here in the principle of CAVEAT EMPTOR.

But, I am also concerned about inducements that may be offered to respected, independent users in the form of eequipment provided for review purposes. Such HAS happened here in the past on a number of occasions. The proprietors of this site have even posted regarding their policies in doing so.

Many of those respected users who have participated in this practice have responded with outrage when they have felt that their integrity has been questioned. And, for many of them, I believe that they have been open and candid regarding their receipt of free equipment to the exstent that I DON'T question their integrity or the honesty of their posts.

But the problem is, I don't know how many of the rest of the "partisan" users here have received inducements here that we are NOT aware of. This information, I believe, is VITAL to my ability to evaluate the posts that I read that inevitably influence purchase decisions (as I believe that they are intended to do).

I work as a state government human services for the disabled administrator. We take careful pains to inquire about conflicts of interest amongst the offerors of the contracts that we solicit, and even greater pains to require disclosure of potential conflicts of interest in those, including myself, who are asked to serve on panels evaluating the proposals that we are sent. Of course, none of us own this forum and therefore, we have no place in requiring, suggesting or even expecting such efforts or policies to protect us against such conflicts of interest. Once again, this forum is "owned" by a retailer with an intrinsic VESTED INTEREST in sales.

However, as a simple courtesy to one another, I would desperately hope that any of us who are simply friends and colleagues struggling together to overcome the same disorder, have the integrity to simply disclose UP FRONT ANY POSIIBLE CONFLICT OF INTEREST OR INDUCEMENT that they may have received from ANY source. Such inducment might be as simple as the pride one gets for being recognized as a respected member by being selected to review a piece of equipment int he first palce. This is still an inducement however. The fact that such individuals may have purchased the equipment before or after posting their review is irrelevant. The inducement of being selected to post the review needs to be disclosed IN ADVANCE. And, given the number of new members who turn to us evry day, this disclosure needs to be reminded frequently.That's the only way that we can fairly evaluate the merits of reviews or incidental posts. That's the only way that we can fairly rely upon one another for truly helpful advice.

However, once again, we are all playing on a retailer's playground here, so LET THE BUYER BEWARE (CAVEAT EMPTOR)!!!

BTW, I have NO interest in ANYONE'S sales or profits related to xPAP or SDB. And, I'll NEVER recommend one piece of equipment over another. I believe that each of our experiences is different and we all need to try before we buy, and DEMAND NO LESS from our suppliers. Our health depends on it.

Now, bring on the flames.

Chuck

bbeck4x4 · Post by **bbeck4x4** » Sun Sep 17, 2006 11:37 am

I am unfortanly unaware of the issues with DSM, so on that issue I don't comment, but for the rest of your message, why should their be flames? I agree, that a person should disclose a bias when giving an opinion/s It could be as simple as a message in the tag line for each post.

Brian

just a fellow cpap user

Goofproof · Post by **Goofproof** » Sun Sep 17, 2006 11:45 am

I, Goofproof, confess, I am a CPAP.Com implant, I took the bribe, and excepted Cpap's offer of a Remstar APAP with HH, for the Discounted Price of $709 delivered. For this, I will do time here, trying to spread the truth and enlighten fellow hoseheads to the best of my ability. I swear on my Hose! Jim

OSAGuy · Post by **OSAGuy** » Sun Sep 17, 2006 11:46 am

Well put Goofy. Our goal should be to provide independant opinions and help, not recommending one brand or manuafacturer over another. Resmed seems to get bashed quite regularly. However, the root of that issue may be more due planned or rumored corporate poilcies rather than the quality of the equipment. I have no experience with Resmeds product line so have no opinion about them. I am one that does not believe erverything posted on any internet site is true. As a matter of fact, I take most internet information with a great deal of skepticism. This forum does, over all, seem to provide good information in many cases.

DreamStalker · Post by **DreamStalker** » Sun Sep 17, 2006 11:58 am

No flaming from me either nor am I aware of DSMs post(s)/concerns. I agree completely with Chuck's take on this topic.

I will also state for the record that I receieved my Hybrid free of charge from my DME ... which I took as a rare and lucky day. No conditions were given to me other than to provide some feedback to the DME (they had never heard of it prior to my asking them to get me one ... and I was fully prepared to purchase it). To this day I have not provided them the feedback they requested as I have not fully evaluated it and I will likely let the forum members here know before I let them know.

My past and future comments on the Hybrid have not nor will ever be influenced by the fact that I got it for free. Free or not, all of my comments are my honest opinions regarding anything I have said or may say about XPAP products ... or anything else for that matter.

- roberto

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CPAPopedia Keywords Contained In This Post (Click For Definition): DME

kteague · Post by **kteague** » Sun Sep 17, 2006 2:32 pm

Chuck,
From my perspective, no reason for flames - your points were very well presented. I think we all, while very appreciative of this forum and it's value to us, understand that it is not an entirely benevolent gesture on the part of the cpap.com owners. It's a marketing tool for them and a treatment tool for us - mutually beneficial.

Do I think there are plants (NOT SITE RELATED but manufacturer or otherwise related), where info under the guise of being a legitimate user is infused to stack the decks - absolutely. These types of forums are a marketer's and/or investor's heaven. Imbedded advertising. Influence the marketplace. Intentional deceit.

Now, that's a totally different picture than someone doing a review on a product they got for free. I'd never thought about it, but it wouldn't hurt for mention of that to be included just to keep things above board. I don't question the honesty of the reviews done by regulars. But a person who is a plant would just lie about it anyway.

Product recommendation by user preference is a large part of this forum, and has proved valuable beyond measure to the newly diagnosed not knowing which way to turn. If something works, it just works, and folks are going to say so.

I have a ResMed machine with no complaints about its function. I just don't know enough about the intricasies of it's operation in comparison to other products to rave about it. ResMed shot themselves in the foot with poor discretion in what to say in a public forum. But we all know that just because they got caught with their foot in their mouth doesn't mean the other manufacturers weren't in a corner somewhere sneaking their foot back out just in time. The way I see is, ResMed may have taken the hit for the industry. If so, that's a shame. Maybe to get back in good graces they could make available some free quality products for review - I'd do it, and be honest about getting it free and about how it worked.

I think it boils down to continuing to make the point for new persons to the forum that one person's experience does not always translate to another's success with a product. We do a good job of that. Bottom line responsibility lies with them.

Thanks, Chuck, for reminding me that this forum is a slice of the rest of our world - for the most part a great place to be, but not perfect.

Kathy

NightHawkeye · Post by **NightHawkeye** » Sun Sep 17, 2006 3:01 pm

Good points, Chuck. Integrity can be an important commodity.

Having attracted a few of those flames from Respironics advocates myself I feel compelled to comment.
- ResMed brought dishonor upon their own house recently.
- PB machines have a poor reliability record recently judging from accounts here.
- That pretty much leaves Respironics as the cheapest, most reliable source.

I experienced consternation about flames the first few times I posted about glitches, or design flaws, with Respironics equipment, but after I decided to approach it as more of a game, it was kinda fun baiting 'em to see just how illogical the arguments could become. (After all, defending the indefensible is pretty much a losing proposition.)

Of recent concern to me is a tendency to head off open discussion of design flaws about Respironics equipment by going "underground" with PM's. The way this works is that somebody posts of a specific problem with a Respironics machine, like runaway pressure, and rather than openly discussing it, one of the esteemed members of this community responds via PM with a "solution" for the person experiencing this problem and then no further discussion ensues on this forum.

Like you say, Chuck, this is a commercial forum, and we all recognize that vested interests are definitely involved here. There is certainly some very good information available here, but there is still some garbage as well. It all comes back to caveat emptor.

Regards,
Bill (who hasn't taken a dime from anyone here, but happy enough with Respironics)

Arizona-Willie · Post by **Arizona-Willie** » Sun Sep 17, 2006 3:23 pm

I received all my equipment with no out of pocket expense.

From Medicare.

I may, from time to time, own stock in one or more of the companies involved here.

But I don't presently.

That wouldn't influence any post I made here anyway. And any amounts of stock I held would be so small as to be almost laughable

I hadn't given much thought to posts here being from representatives of the various companies .. but I sure wouldn't be surprised. The political newsgroups are full of paid political operatives so why wouldn't places like this be?

It < is > a commercial forum provided free of cost by a retailer. A good retailer from what I have seen so far. But it is another form of advertising for this company.

Always remember, the internet is just like a city street. Mostly good people strolling along, but plenty of pickpockets in the crowd.

Sleepless on LI · Post by **Sleepless on LI** » Sun Sep 17, 2006 4:29 pm

Chuck,

Mind giving the link to the thread, please? I am also a long-time fan of DSM. Has always been a great contributor here as long as I've been around, not to mention one of the nice guys. Would like to read what it is you are speaking of. Thanks.

GoofyUT · Post by **GoofyUT** » Sun Sep 17, 2006 4:36 pm

I do wish to point out that I respect ResMed for its very well thought-out human factors design and its admirable scientific candor in listing the considerable body of scientific literature evaluating its algoritm on its web site. This listing includes not only the references, but hyperlinks to the actual articles to allow the interested and critical reader to easily access the literature directly with simply a click. Respironics on the other hand, lists references to many articles as well, but includes NO hyperlinks to the actual articles, and only includes links to abstracts of these articles, abstracts which are written by Respironics themselves, not the authors or editors of the articles.

I DO NOT agree with ResMed's price-controls policy, but I am not a child and I do understand that such protection of certain dealers is part and parcel of the world of sales. It is NO different than the "Blue Sky" policies of EVERY auto maker.

However, comments regarding the clinical efficacy of competing machines should have NOTHING to do with the manufacturer's commercial philosophies; They should be based ONLY on the research, or in the context of this forum, user's UNBIASED reports of their actual experiences with the equipment. The user can sort out for themselves if they want to shell out the bucks to purchase a manufacturer's product, but should do so ONLY after they've been able to make the best-informed decision themselves about how valuable that purchase will be for them.

Having said all this, I have had the benefit of fair trials of Fisher and Paykel, ResMed AutoSet and Respironics Auto xPAPs. And, I have recognized that the Respironics algorithm works most effectively FOR ME. And I have shared my impressions openly on this forum on a number of occasions along with my speculations about why I believe this to be the case. But, my impressions and choice of Respironics auto PAPs are valid ONLY for me. I believe that there are those that will do much better with ResMed AutoSets, and several of my colleagues here will support this contention. Above all else, I have come to understand that each of our responses are different from one another's and that it absolutely behooves us all to insist that we have the opportunity to TRY BEFORE WE BUY. I'm astonished that the DME community has foisted this farce of forcing a machine on us for so long. It simply is ridiiculous, since our health depends on the best possible match between patient and treatment algorithm.

Predictably, a cowardly "Guest" post appeared on the thread that prompted me to make my original post here, in defense of DSM. That thread is entitled "What data does my HC234 keep?" Here is my notice that I consider such anonymous guest posts to be only as valuable as the courage demonstrated by their authors.

Chuck

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

Guest · Post by **Guest** » Sun Sep 17, 2006 4:45 pm

In the other thread GoofyUT referred to, dsm implied there are "regulars with vested interests" being paid or given equipment in exchange for favorable reviews.

In the past, Johnny Goodman has generously allowed users to trial equipment for their unbiased reviews. To insinuate otherwise, is, at the very least, inaccurate. To suggest there are "regulars with vested interests" being paid or given equipment in exchange for favorable reviews is not only unsubstantiated, but insults the integrity of Mr. Goodman and cpap.com.

I think we need to be careful not to assume an opposing opinion must be the result of illicit payola. Just because someone is in disagreement with an opinion expressed by an esteemed member of the forum doesn't mean they must be "regulars with vested interests" or guests who are only interested in flaming, being obnoxious and attacking.

GoofyUT, I don't think it's a big surprise we see the slant towards Respironics and away from Resmed -- especially in light of their internet pricing debacle. We're all on the internet and Resmed is gunning for us. It hard to recommend their products with a clear conscience when equally effective products are offered by Respironics. Resmed created their own monster on this one and it has certainly contributed to the "almost monolithic adoration of Respironics." I don't find it worrisome. I find it a healthy by-product of freedom of speech. We are making ourselves heard. There is power in numbers and I'd agree with you; on this forum the numbers indicate Respironics is the preferred manufacturer of equipment. Somebody has to be ahead and it only makes sense the company that's ahead here at cpaptalk isn't the one that has proudly broadcast their intention to screw internet customers while at the same time making the ludicrous claim they are doing so out of concern for the patient. They insult our wallets and our intelligence. On the other hand, for those users who obtain everything through their DME and are blissfully unaware of the internet pricing policy Resmed plans to implement, I'm sure Resmed is viewed in a very positive light. Here, on the internet, it should come as no surprise to see Resmed met with what you describe as "torrents of derision." They brought it on themselves.

I also think we need to be careful when referring to a machine as having a "design flaw." No cpap or apap or bilevel is capable (yet) of being all things to all people. A machine one person finds to be "flawed" with their particular breathing patterns and irregularities is the very machine that works brilliantly for someone else. One man's perceived design flaw is another man's panacea. It would be a shame to steer anyone away from a machine because they misunderstood the pronouncement of "design flaw" to mean the machine cannot work properly.

Everyone has their opinion about their favorite equipment. The problems seem to arise when someone attempts to put forth their opinion based upon their experience and claims their observations are a matter of fact for everyone. Nothing could be further from the truth.

GoofyUT · Post by **GoofyUT** » Sun Sep 17, 2006 4:50 pm

Though i'm not inclined to indulge acts of cowardice, WHO SAID ANYTHING ABOUT DESIGN FLAWS HERE?

Vader · Post by **Vader** » Sun Sep 17, 2006 4:57 pm

Anonymous wrote: Everyone has their opinion about their favorite equipment. The problems seem to arise when someone attempts to put forth their opinion based upon their experience and claims their observations are a matter of fact for everyone. Nothing could be further from the truth.

I agree wholeheartedly.

Would you mind if I used that as my sig line?

Guest · Post by **Guest** » Sun Sep 17, 2006 5:01 pm

GoofyUT wrote:Though i'm not inclined to indulge acts of cowardice, WHO SAID ANYTHING ABOUT DESIGN FLAWS HERE?

Acts of cowardice? What are you referring to?

Who said anything about design flaws here? You must have missed NightHawkeye's post.

NightHawkeye wrote:I experienced consternation about flames the first few times I posted about glitches, or design flaws, with Respironics equipment, but after I decided to approach it as more of a game, it was kinda fun baiting 'em to see just how illogical the arguments could become. (After all, defending the indefensible is pretty much a losing proposition.)

Vader wrote:
Anonymous wrote: Everyone has their opinion about their favorite equipment. The problems seem to arise when someone attempts to put forth their opinion based upon their experience and claims their observations are a matter of fact for everyone. Nothing could be further from the truth.
I agree wholeheartedly.

Would you mind if I used that as my sig line?

Thanks Vader! Feel free!

NightHawkeye · Post by **NightHawkeye** » Sun Sep 17, 2006 5:06 pm

GoofyUT wrote:WHO SAID ANYTHING ABOUT DESIGN FLAWS HERE?

That was me, Chuck! .

NightHawkeye wrote:I experienced consternation about flames the first few times I posted about glitches, or design flaws, with Respironics equipment, but after I decided to approach it as more of a game, it was kinda fun baiting 'em to see just how illogical the arguments could become. (After all, defending the indefensible is pretty much a losing proposition.)

Gets 'em every time, Chuck, a veritable Pablovian response . . . (Shave and a hair-cut, six bits . . . )

Discussion of a particular machine short-coming would be so much more valuable to everyone here. But, as I said, it appears that some here have a vested interest in seeing that does not happen.

Regards,
Bill

An Open Note regarding Integrity

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