Attention Manufacturers! Changes we'd like in our equipment

[The Latinist]

Hmm yes I assumed these could be connected via ad hoc like any other wifi device. Maybe they can't.

Ok seems this type definitely can:

http://www.toshiba-components.com/FlashAir/faq.html#1

Others can do ad hoc but sound limited by types of file they share from brief read.

FlashAir does not work. Neither PR nor ResMed machines recognize the card. They insist on formatting it, in which case the card loses its WiFi software.

[chunkyfrog]

The machine needs wifi capability built in.
Data accessibility needs to be a given.
Let any docs who can't keep up, be left behind.
It is wrong to leave treatment inaccessible to the disabled/blind, so how about an optional voice interface?

[bavinck]

8 foot heated hose with on/off control at the mask end.

[BlackSpinner]

It is unfortunate that the manufactures do not consider us their customers. They have instead listened to the DME's and are producing cheaper brick versions of the good machines.

[Overflow]

Hmm yes I assumed these could be connected via ad hoc like any other wifi device. Maybe they can't.

Ok seems this type definitely can:

http://www.toshiba-components.com/FlashAir/faq.html#1

Others can do ad hoc but sound limited by types of file they share from brief read.

FlashAir does not work. Neither PR nor ResMed machines recognize the card. They insist on formatting it, in which case the card loses its WiFi software.

Ah these have been tried before. Nevermind then.

[robysue]

It is unfortunate that the manufactures do not consider us their customers. They have instead listened to the DME's and are producing cheaper brick versions of the good machines.

This is, alas, unfortunately true. And it has direct implications on what the manufacturers will and will not hear from us, the mere patients who use these things.

And because the manufacturers regard the DMEs as their customers and not us, this suggestion frightens me tremendously:

Wifi: lets have our machines automatically load our nightly data to our computers or tablets via wifi

I see a day when CPAPs do indeed use (our home) wifi to transmit (our) data directly to the DME and doc, but in an encrypted format designed to make sure that we, the patients, have absolutely NO access to our data at all. And if we dare to "crack" the encryption and "steal" the data anyway? They'll regard it as some kind of a major security breach and we'll be engaged in an ever escalating war between the manufacturers' attempts to prevent unauthorized use of their "system" and the hackers amongst us patients.

After all, the manufacturers refuse to sell us the software they've designed to read the data and way too many of the DMEs (and docs) tell some version of ``You don't need to see any data.''

[49er]

The machine needs wifi capability built in.
Data accessibility needs to be a given.
Let any docs who can't keep up, be left behind.
It is wrong to leave treatment inaccessible to the disabled/blind, so how about an optional voice interface?

Great point CF about the machines being inaccessible to people with disabilities, particularly vision impairments. That is disgraceful.

49er

[chunkyfrog]

The machine needs wifi capability built in.
Data accessibility needs to be a given.
Let any docs who can't keep up, be left behind.
It is wrong to leave treatment inaccessible to the disabled/blind, so how about an optional voice interface?

Great point CF about the machines being inaccessible to people with disabilities, particularly vision impairments. That is disgraceful.

49er

---especially considering the links from OSA to diabetes to blindness.

[49er]

The machine needs wifi capability built in.
Data accessibility needs to be a given.
Let any docs who can't keep up, be left behind.
It is wrong to leave treatment inaccessible to the disabled/blind, so how about an optional voice interface?

Great point CF about the machines being inaccessible to people with disabilities, particularly vision impairments. That is disgraceful.

49er

---especially considering the links from OSA to diabetes to blindness.

No kidding.

Anyway, if I have a chance, I may call Resmed and see if I can talk to someone about this. I am not expecting to have much luck but you never know.

49er

[DKC_apnea]

Have only been on CPAP for a little over three months, but here are some suggestions based on my experiences with my equipment.

1) EPR

• Would be nice if the EPR could ramp similar to the pressure. For example, you could start with an EPR of 3, and once ramp is completed the EPR is gradually reduced to 1. As of now you only have the option for the EPR to be set to OFF, Ramp Only, or Full Time.
• Decimal increments would be beneficial. Now you can only select an EPR of 0, 1, 2, or 3. Why not be able to select say 1.6? Pressure is incremental in 0.2 steps, so why not EPR also? This would allow the user to further fine tune their pressure and EPR combinations.

2) Remote
Some people may prefer to have their machine a bit further from the bed, but still want to be able to start/stop/pause the machine easily. A small basic remote would help.
Similarly a longer ClimateLine tube option (say 8 feet, instead of 6) would be beneficial.

3) Continuous LCD display (with brightness control) while machine is operating.
Sometimes finding the unit (and controls) in complete darkness is a challenge. By having the option for a continuous LCD display it could opt as a night light, with adjustable brightness as well.

4) Water reservoir
Would be nice if they included (or sold as an option) a measuring tube, so one could measure and pour in an exact amount of distilled water, rather than try to use the reservoir's rudimentary level gauge.

5) Software updates on unit.
How does one know they have the latest software update for their machine? I shouldn't have to contact the supplier or manufacturer to find this out. The manufacturers should post the information online and, if there is an update available, allow the user the option of downloading the update and installing it on their machine.

Note: My unit does not have any notification if the power goes out (other than it stops providing PAP). Instead of suggesting an alarm be added, I think I may invest in a small Backup UPS. The UPS will serve a dual-purpose, in that It will keep the machine operating during power failures, and will have the option of alerting me when the power goes off.

[library lady]

It is unfortunate that the manufactures do not consider us their customers. They have instead listened to the DME's and are producing cheaper brick versions of the good machines.

This is, alas, unfortunately true. And it has direct implications on what the manufacturers will and will not hear from us, the mere patients who use these things.

And because the manufacturers regard the DMEs as their customers and not us, this suggestion frightens me tremendously:

Wifi: lets have our machines automatically load our nightly data to our computers or tablets via wifi

I see a day when CPAPs do indeed use (our home) wifi to transmit (our) data directly to the DME and doc, but in an encrypted format designed to make sure that we, the patients, have absolutely NO access to our data at all. And if we dare to "crack" the encryption and "steal" the data anyway? They'll regard it as some kind of a major security breach and we'll be engaged in an ever escalating war between the manufacturers' attempts to prevent unauthorized use of their "system" and the hackers amongst us patients.

After all, the manufacturers refuse to sell us the software they've designed to read the data and way too many of the DMEs (and docs) tell some version of ``You don't need to see any data.''

What I don't understand is the WHY. Why don't they want us to see our data, and manage our own therapy just as diabetics manage their illness? Diabetics are encouraged by their docs to monitor their insulin... but they don't want us to monitor our therapy? Makes no sense to me at all. The other day my GP was impressed by my knowledge and that I had upped my lower pressure to 9 from 8... he's noted it in my record, but I don't know what the sleep center staff will think of it when I go back for another compliance check.

[BlackSpinner]

What I don't understand is the WHY. Why don't they want us to see our data, and manage our own therapy just as diabetics manage their illness? Diabetics are encouraged by their docs to monitor their insulin... but they don't want us to monitor our therapy? Makes no sense to me at all. The other day my GP was impressed by my knowledge and that I had upped my lower pressure to 9 from 8... he's noted it in my record, but I don't know what the sleep center staff will think of it when I go back for another compliance check.

Because they can charge for providing the data. All they care about re compliance is number of hours. That is how they get paid. The quality of your therapy has nothing to do with them getting paid except that if you complain too much they might get another sleep study out of it.

[chunkyfrog]

So, the question is how can we as individuals effect meaningful change?
Only by educating ourselves and others is there hope.
Of course, a blind apneic might have a huge lawsuit lying there on a silver platter.

[The Latinist]

So, the question is how can we as individuals effect meaningful change?

Just had to thank you for using the correct "effect" there. So many don't, and it's not good for my blood pressure.

[chunkyfrog]

Me too!