Which manufacturer has the "best" website and why?

[Guest]

The reason that the provider will not give you the provider manual is the same reason that a physician will not give you his prescription pad. You then have the ability to modify the prescription setting of the device. I know that a cpap isnt quite the same as a prescription drug, but from the FDA's standpoint, it is. That is the same reason that the encore software is not available publicly. It's not a big conspiracy to make you pay money, it's a federal regulation on medical devices.

And to answer the usual "Well I can take double the amount of my prescription pills with nobody stopping me" reply, if it were as simple as not giving you a manual to keep you from doubling up on your blood pressure medicine, that would probably be required as well.

Go back and tell him about it!

Sooooo.....what about when the doctor prescribes you almost TWICE as much (in this case AIR) as you REALLY need???

Den

[Wulfman]

Guest.

I DID! I also showed him the printouts from Encore Pro that showed I was doing just fine (average AHI of 1.5 or less within a week) on a pressure of 10 (I had reset the machine after less than an hour at 18...). His response was (quote) "I can't believe you're doing that well on almost half the pressure I prescribed!" "These readings CAN'T be right!"

This was our LAST meeting. About a month later (after a pulse oximetry study), I DID leave some further printouts from Encore Pro and MyEncore (that were from the nights of the pulse oximetry) with his receptionist for additional follow-up proof.

You would have to meet this guy to appreciate the lack of "bedside manner" that he has.
I don't think I could have tolerated being in the same room with him one more time!

Den

[rested gal]

The reason that the provider will not give you the provider manual is the same reason that a physician will not give you his prescription pad. You then have the ability to modify the prescription setting of the device. I know that a cpap isnt quite the same as a prescription drug, but from the FDA's standpoint, it is. That is the same reason that the encore software is not available publicly. It's not a big conspiracy to make you pay money, it's a federal regulation on medical devices.

I agree with REMmaster about why the provider setup instructions booklet is withheld by most DMEs when they give you your machine. Information in that booklet tells you what hoops to jump through in pushing buttons (and in the case of Respironics' machines, what buttons to push while plugging the machine in) to have access to the therapy setup / clinical menu. Pressure changes and other adjustments can be made within that menu, simply by using the buttons on top of the machine.

I can understand that there are probably a good many people who shouldn't be pushing buttons that would change their pressure. But there are also a good many people, imho, who should be allowed to adjust their pressure. Or "tamper" with their settings, as Respironics' manual insultingly puts it, as if patients are small children. Kinda' funny when you think about the number of times we've read about DMEs dialing in the wrong settings when setting up a patient.

I've got a hunch that if people who wanted to have more control over setting their own therapy pressure themselves spoke to their doctors, and presented good reasons (you can find lots of good reasons on the message board) for wanting to do that, quite a few doctors would agree that would be all right. Then, all it would take would be an order from the doctor to the DME to give the setup instructions manual to Mr/Ms ____.

Personally, I'll just do my tweaking myself -- don't have a doctor, anyway. But for those who don't like going around behind the doc and the DME, or who want to keep their doctor in the loop, I bet most doctors would say "OK" (perhaps with a few caveats) and would be willing to order the DME to turn over the manual to the person.

[birdshell]

Rested Gal:
You make some good points. Isn't the APAP an automated (and more expensive) way to achieve the same effect that you have described? Or am I way off base because I'm fairly new and only use a CPAP? Certainly some cannot handle this kind of responsibility, but I would guess they would NOT be the kind to want to do so about 99% of the time.

On to our Guest asking about user-friendly sites:

A few things:

Personally, I'm wondering why you are asking the questions about the site when anyone well-versed in the writing of web sites should already know most of the answers? EVERY web site should be attractive, easily accessed, have links that work, have useful information, allow one to go back via the back button, etc., etc., etc.

These are just plain-out textbook web site designer basics. Actually, these are simply applications of good teaching and writing of manuals to the web site 'genre', so to speak. Perhaps it would be best to consult a textbook. They are probably available at your local public library, or at the nearest college bookstore. There are many books for sale at various bookseller's sites on the internet.

All of that said, ResMed has some good information on its site. I've referred many folks there for the multi-media presentation titled, "Sleep Disordered Breathing." To see what is wrong with their web design, please go there and try to find that piece. I knew that the information was there and ended up searching for several minutes more than once.

IMHO, categorizing is the major problem in web site design. Safeguards redirecting the lost are always appreciated. In other words, make that site idiot-proof. All of us have our idiotic moments and no one should be made to feel foolish.

Humor is always good, even if it is subtle. It makes one feel comfortable. Check out the GEICO site when the gecko peeks out around the text, just as one example.

Thanks for asking--but how about asking for the specifics? One's life is hopefully extended due to xPAP usage, but time is still one's most precious commodity. In fact, if your web site wastes one's time, the company the web site represents is at a disadvantage.

This may be your most beneficial activity: Have a bunch of xPAPers try out your site design and critique it once it is designed. That may be more productive than this survey.

[Darth Vader Look]

The reason that the provider will not give you the provider manual is the same reason that a physician will not give you his prescription pad. You then have the ability to modify the prescription setting of the device. I know that a cpap isnt quite the same as a prescription drug, but from the FDA's standpoint, it is.

This reasoning is just too lame for me. You can draw many similar inferences and comparisons that are pro and con in relation to this but thanks for pointing that out. Can I go out and play now

[birdshell]

Maybe it is not wise to allow ANYONE to reset their pressures, but if one is using the machine would it not be safe to assume that one has his/her own best interest at heart?

What about those who have delusions-of-demi-godness physicians, or those whose DME providers and physicians are HOURS and HOURS away? While there are provisions for the best interest of everyone, is this rule/policy truly in the best interest of EVERYONE?

Just asking. Maybe it is an issue I just do not understand.

I do not need or want to reset my machine, but I live 15 minutes from the DME provider. My hometown is 2 hours by car (and no public transportation) from a DME provider, just for example. How about a 4 hour or 6 hour drive? Within my state, that is possible.

[Darth Vader Look]

The fact is that if xPAPs were so deadly dangerous the manufacturers would be making it near impossible, for the simple minded people they take us for, to adjust these things up ourselves. The FDA would not approve a unit that was so easy to make pressure adjustments to and would mandate this of the manufacturers before allowing them to sell the units. DMEs would have mandatory manufacturer training in all model lines and be certified as capable to setup all units sold. You would not have a DME questioning or outright ignoring a doctor's prescription . The DME is not given a patients medical records, just the prescription, period. A DME wouldn't be allowed to sell the clinician's manual on ebay and just as ebay removes xPAPs from the auction, so would they with these manuals. A DME would have to have a completed high school education at minimum (I will assume most probably already do ).

The fact that a person with diabetes has more control over their care of that much more dangerous and deadly disease just goes to tell you how archaic treatment in SDB can be. You are your best advocate in seeing and controlling your treatment of this growing health problem but if you want to surrender that to your DME or doctor, that is your right. Nothing says that if you do take more control of your treatment that you can't share that with your doctor, although we have heard of a few doctors who couldn't give a rat's behind whether you do or not. .

[Guest]

Actually, what can a manufacturer put on its website that is DIFFERENT than what Johnny already posts in this online store?? If you look up the latest CPAP device on here, all of its features are listed (weight, dimensions, etc., that you all had requested). Reviews are also here.

My question: Why even bother going to the manufacturer's website if everything that you need is here?

Please, your thoughts?

[sleepyone]

Is anybody still reading this thread? It would be great to have instructions about how and when to adjust pressure settings. This is NOT rocket science, AND, User Friendly should be more than bait. You will get a loyal following if you answer questions that people need answers to and make it easy to understand. This forum - CPAPTALK.com - is, in my experience, the VERY best place to get infomation and support about CPAP.

Tell the truth, care, be easy to figure out, if you don't have an answer for someone (about your product) get that answer! Sell your product for a reasonable price and allow exchanges!! Keep it simple.

[Wulfman]

Actually, what can a manufacturer put on its website that is DIFFERENT than what Johnny already posts in this online store?? If you look up the latest CPAP device on here, all of its features are listed (weight, dimensions, etc., that you all had requested). Reviews are also here.

My question: Why even bother going to the manufacturer's website if everything that you need is here?

Please, your thoughts?

Yes, that would be my thought, and especially since the manufacturers don't even consider us as "customers". They've traditionally thought that their customers were the DME suppliers and it ended there. My impressions of their websites (a year ago), when I started on my therapy, were that they were very unfriendly.....not to mention confusing.
I found everything I needed right here at CPAP.COM.....especially with the help of their very knowledgeable staff.

That being said, it doesn't change the way that the manufacturers SHOULD present their products to their (real) customers and potential customers.

Den

[Guest]

Den, with these products (specialty medical) you tend to market to that party which purchases your product directly. It doesn't mean that manufacturers don't 'care' or ever solicit feedback from consumers/users.

The question is how do you do both?

[Wulfman]

Den, with these products (specialty medical) you tend to market to that party which purchases your product directly. It doesn't mean that manufacturers don't 'care' or ever solicit feedback from consumers/users.

The question is how do you do both?

Do you mean they can't DO both?
I realize they have a lot more products than just XPAP-related equipment, but the consumer market is becoming more knowledgeable.....particularly with the Internet web-based information. There's getting to be more of an interest in monitoring one's own therapy.....right now in the XPAP market and I can see more interest in oximetry monitoring. Maybe oxygen generators will be next.....who knows?
I TRY not to be critical of the B&M DME suppliers because I've never actually dealt with any, but when I read the stories on these forums about some of the things that they pull on their (less informed) customers, it makes me mad.
Many XPAP users just get handed the equipment that the DMEs want to get rid of, want to make the most profit on, or some other reason, rather than what is the best for that person.

Den