Software availbility to users

[dudu60]

Should user give notice to their lawyers?

I THINK, I understand why suppliers of CPAP machine wont allow users to set the machine ...

BUT I DON'T UNDERSTAND WHY THEY WON'T SELL THE SOFTWARE AND LET USERS FOLLOW OUR OWN TREATMENT... DOES NOT make sense ...

Maybe, only maybe, this is an exaggeration but from what I read and saw in this forum and elsewhere:

a 10 year old kid could learn to read these reports if you gave him or her just a little information on how too read them: leaks need to be below XXX, IA need be below YYY, IAH need be below ZZZ, and so on...
if the prescribing doctors would provide the XXX, YYY and ZZZ and so on following the initial evaluation leading to the use of a Cpap by a user.

Question:

How many users are getting poor results between visits to a sleep specialist without knowing because they simply don't have access to the information.

I am curious:

Question:

A user that would would suffer or die of a stroke due to poor setting and lack of access to the data to find out

... Could he or his family sue the specialist and/or manufacturer of the Cpap machine for not having given the patient access to the data and allowed him or her to take preventive corrective measures ?

Question:

WHY do manufacturers not sell or publish the software to users whom generate so much revenues for manufacturer by buying all these nice machines ...
Is the limitation coming from the manufacturers ?
Is it the medical profession that are requesting the ban on information availability ?
Are the insurance companies requesting the ban on information availability ?
Are government agencies requesting or regulating a ban on information availability ?
Is their a law in the US, Canada, the UK or elsewhere in the world, limiting distribution of the software to specialists?
Is it somebody else ? if so WHO ?

I asked Respironics and Rescan if they would sell me their software before buying my cpap machine ?

ResMed said they do not sell their software to users

Copy and pasted quote from ResMed's anwer:

Thank you for your inquiry, in response to this ResMed does not sell this type of software to patients and here a
couple of reasons due to the complexity of the programs:

1. ResMed can only sell to registered ADP vendors in (Name of a place were I don't live)
2. ResMed can only sell to companies that have health care professionals (Registered Respiratory Therapist, Registered Nurse or Registered Polysomnology Technologists) employed to ensure proper patient care.

Regards
Purie Mendoza | Customer Service/Canada, Puerto Rico, US & British Virgin Islands
ResMed Corp
9001 Spectrum Center Blvd.
San Diego, CA 92123

Note : you can see the software's screenshot from Uncle Tom in this forum ...
which seems to indicate ResMed's spokperson is at least officially "exaggerating a little bit if nothing more"


Resporonics did not even answer

Questions:

If a user got the software off the Internet without the manufacturers approval :
Could the user or his family sue if he wrongly used the information due to the lack of availability of supporting documentation ?
Would the manufacturer sue the user for having gotten the software in the Internet if the user asked to buy but was refused ?
....(follow-up to prior) And if so would any judge in any country condemn a user who got the software on the Internet for wanting to know more about his own health condition in order to increase his chances not to die ?

Can anybody:

manufacturer, insurers, medical specialists, users, lawyers, judges or government official

provide some light about the above questions?


dudu60

[LinkC]

Unfortunately, that's their policy. They have every right to pick who they will or will not sell their products to.

Should you obtain their software illegally, I don't believe they have any liability if you use it improperly. The fact they didn't supply you with the documentation for what you stole is moot. And, for the record, the manufacturers don't offer advice on how to interpret the data to anyone. That's what med schools (and message boards! ) are for.

As to your "would any judge" question: the fact that you illegally obtained the software would likely impress the judge more than any noble motive.

"Yes, your honor, I stole that car...but I needed it to go to my doctor's appointment, and the owner refused to sell it to me."

(Perhaps if you'd register so you can accept PMs, someone might offer a way out of your dilemma...)

[dudu60]

LinkC, Thanks for your reply.

But it does lead me to more questions:

Are message boards and message boards user liable for providing informations the manufacturer does not want to provide ?


Your analogy with the car is weak ...

... in the case of a cpap user, we are talking about information for a tool (cpap machine) that the user has bought legally to avoid the risk to his life caused a sickness and of information available from the software for the device purchased (cpap machine) to help the user which is wilfully ( possibly illegally ... needs to be tested in court) made unavailable by a third party (the manufacturer).

Now if one would steal a cpap machine itself from another patient, you car analogy might be better... (even there, in many countries including USA, Canada and others, the provision in "self preservation" or "self defence" have impacted legal decisions by courts ...).

We are not talking here of stealing a song or a film, making copies and selling them to make a profit ... we are talking of one person using a purchased device and this device containing information that can help this person save his own life... information retained by third party by its unwillingness to provide (for a price or for free) the information needed to potentially save the user's life, the legal owner of the machine.

If one would be taken to court by a manufacturer ... I do believe that the argument "gaining access to information in order stay alive" may find grounds in the heart of a judge since the actual machine is sold for that same purpose by the same manufacturer.

By the way, just to make sure this is properly understood:

I did not say I have the software, what I said is that I want to buy a legal version of the software and the manufacturers wont sell it to me and the reason given does not hold grounds.

... and I think I may have to refer to lawyers to get access to a legal version of the software and I may...

... but if I have to go to court, it would be more fun to go to court as a group rather than as one user ... don't you think!

I still remember that my father always told me not to cheat.
Avoid fights unless you have too but ...if you have to fight, give it all you can.

I am sick and I want to control my own destiny ..."I feel I have to give it all I can".

I do hope we have legal advisors in the readership of this forum.

And ... I also hope manufacturers will respond themselves with real (read: verifiable) reasons for withholding the software from users. Who knows I may be wrong afterall though ... I doubt it.


Dudu60

[blakepro]

What would be nice is if a group of smart people put together some open source community based software that we could use to access the data.

[LinkC]

Your analogy with the car is weak ...

You legally bought the machine. You did NOT legally buy the software. It's not available for purchase to the end user. And I can't think of any product that it's illegal to NOT sell.

We are not talking here of stealing a song or a film

But we ARE talking about "stealing". The illegality doesn't change based on whether you make a profit.

If you think you have a case, call 1-800-ASK-GARY. See if they think it has merit.

(Please register. You'll be glad you did...)

[JohnBFisher]

... But we ARE talking about "stealing". The illegality doesn't change based on whether you make a profit. ...

And if you don't think it matters, please LOOK at the following Google query:

http://www.google.com/search?q=fines+fo ... ding+music

Trust me. Each and every one of those people were fined for either downloading or allowing others to download music. I bet each and everyone of them were probably SHOCKED at the fines they faced.

Will you face such a fine? Probably not. Could you? Yes! It is copyrighted material.

Rather than illegally download the data, get your doctor on your side. Ask if they would deny a diabetic their glucose monitor. If you press forward like that, your doctor can recommend you have access to some method to download and see the results of your therapy. I know. I did just that. My doctor agreed to it. I then convinced my DME that it would be easier for me to have it than for them to periodically need to deal with it.

This way, my copy is not illegal. In fact the ResMed representative is the one who provided me with a copy.

Just something to think about ...

[bigk]

Resmed DO sell their software to end users in Australia. It is freely available to patients there. It is even bundled with the S9 and I got it FOR FREE from my online DME in Australia upon my Doctor signing a certificate saying I could have it.

[howkim]

OK, so we're talking about software that will be used to make treatment decisions for a patient. Don't think it matters that the decider is the patient and not a physician. Look up "21 CRF Part 11." It's the part of the US Code of Federal Regulations that governs software and hardware/software systems that are used in health care to make decisions on patient care. ("21 CFR" is the part of the Federal Regulations that deals with the FDA.) I suspect that ResMed and Respironics have been advised by their legal eagles that they could potentially be found liable in court if they were to sell the software to a patient who then used it in a non-Part 11 compliant computer and was injured. I can practically guarantee you that your computer at home is NOT Part 11 compliant.

Not that I agree with this position, but I think I may see part of what's behind it. And I'm frustrated by it, too.

[.mike]

but if we don't use their software and we read our own card, I don't think there would be a problem with that.
this site has software http://www.mycpap.org

[Gekko]

I'm not a US lawyer (I work and live in Australia), but I have a theory that may or may not prove to be correct. The US is a very litigious society and it is common for companies and professionals to be sued (successfully) where a non-expert end user has used a product incorrectly and injured themselves or sustained damage as a result of incorrect use.

So, my view is that RedMed and other CPAP manufacturers are probably reluctant to provide software to end users because if the end user screws up their settings or misinterprets data and takes incorrect action on the basis of their misinterpretation, they could sue the manufacturer for "allowing" them to fiddle with the settings. Perverse logic, but that seems to be how the US legal system works and how tort law is practiced in the US.

To take an analogous example, if a person manages to break into a building site and falls into a ditch and breaks their leg, they could probably sue the developer or builder for not having done enough to "prevent" them from entering the building site, even though they should never have been there in the first place! As I said, I may be incorrect in my assessment, but I can't see any other reason for their refusal to sell the software.

On a side note, since the software is available in Australia, perhaps you could simply buy the software from an Australian supplier? You would probably not be covered if use of the software causes you damage, but let's be honest, CPAP treatment is one of the safest medical "treatments" available today. Considering the horrible side effects of a lot of pharmaceutical substances, I wouldn't worry about doing yourself damage with a CPAP machine (unless you drop it on your foot).

[dae3dae3]

By the way. It is not "stealing" it is copyright infringement.

It also breaks the DMCA law to break the encryption on a DVD in order to make a backup copy but it is legal to make the backup after the encryption is broken. (That has gone all the way to the US Supreme Court) The only reason I can't have a movie server so I can play all my DVD's that I bought without having to dig out the disk is because of the DMCA. When I buy a cd I rip it and put it on a shelf. This is completely legal because I don't break any encryption to do it. I can play any CD I own without touching a disk.

Whether it is correct or not or legal or not doesn't change the fact that if the manufacturers make it difficult to buy something legally they will create a black market for it. Napster only existed because the record labels refused to provide a product that there was overwhelming demand for. Copy protection only inconveniences the honest buyers of the products. The pirates will never even see the copy protection because it will have been stripped two seconds after it was implemented. The only people that don't see FBI warnings are software pirates because that is the first thing to be stripped. There isn't a movie or song that I can't download right now and watch tonight with no copy protection problems. I do own a DVD however that won't play in my DVD player because the copy protection doesn't work with my player. I had to crack the encryption and rip then burn a copy in order to watch the movie I paid Disney $20 for. The store also wouldn't let me return it because it was opened even though it was intentionally manufactured in a defective manner.

Provide a product that I can use and I will pay for it. If you won't sell me a copy of something I need to use your product and the product is pretty much crippled without it guess what I am going to do?

[dudu60]

Very impressed by answers up to now but let me bring my point further by answering to some of past comments.

howkim states :

"Look up "21 CRF Part 11." It's the part of the US Code of Federal Regulations that governs software and hardware/software systems that are used in health care to make decisions on patient care. ("21 CFR" is the part of the Federal Regulations that deals with the FDA.) I suspect that ResMed and Respironics have been advised by their legal eagles that they could potentially be found liable in court if they were to sell the software to a patient who then used it in a non-Part 11 compliant computer and was injured. I can practically guarantee you that your computer at home is NOT Part 11 compliant."

But the reason I want the software is simply that I want to follow my treatment... and if I suspect my treatment is not working as it is supposed to ... then go to my treating expert (as per US law event if I am not in the US ... nor Australia (sadly) ...

I am a new user ... I was shown how to install the mask and used the machine (45 minutes) and informed that I could change mask for a month if need be. Two weeks later ... nobody is checking if I am doing this right or not ... my next meeting with my doctor is scheduled for January 26 2011(next year) ... How can I know if the treatment is working or if I am using the machine properly if I can't use the feedback from the machine ?

I don't want to touch the setting or make a "specialist decision" ... I just want to know if its working or not ... due to me, the machine or the mask or other.

Is this unique to my corner of the woods!!!

Gekko says:

"I'm not a US lawyer (I work and live in Australia), but I have a theory that may or may not prove to be correct. The US is a very litigious society and it is common for companies and professionals to be sued (successfully) where a non-expert end user has used a product incorrectly and injured themselves or sustained damage as a result of incorrect use."

But that is just it ... companies and professionals are not providing us the tool to insure to prevent us to "incorrectly and injured themselves or sustained damage as a result of incorrect use."[/quote]

HERE is how I ended up with a cpap machine:

I don't know in your area but in my neck of the woods, I never met my treating specialist ... :
- Met my doctor for my yearly checkup in January 2010 and told him I was dozing of at red lights and he suggested and prescribed that I take a test.
- I was referred by a doctor to a qualified technician who got me to take the initial test...( I did met her once and she loaned me the machine which I wore at home one night and brought her back) ... the doctor did give me a prescription to give to the technician
- The technician sent the test results to a specialist, *which I never met or talked to" who determined I needed the machine.
- The technician got directly from my doctor a prescription for a second test to establish the needed settings on a cpap.
- I met the technician another time when she lent me an tow year old model of a Resporonic machine to use at home for 3 nights to determine the settings that I would require
- The information of the second test was then sent to the specialist by the technician ... the technician got the recommendation from the specialist ... and the technician got the prescription from my doctor ( I did not met or talk to the specialist or my doctor in this process)
- The technician (who by the weirdest chance also sells cpap eqpuiment) called me to select the machine
- I selected the machine based on reading I made on the Internet and elswere ... but if I would not have read up on it ... the technician would have selected.
- She ordered the machine I selected, and gave me a 45 minutes course on how to use the cpap machine and adjust the mask

- A week i phone the technician to change mask because I woke up because I could not breathe (probably what some call the Blow Fish or something ... felt like my nose, mouth and lung were full of air and I was out of breath). She left me at her reception desk a new mask that I took in exchange of the old one.

- Since then the treatment seems to work but without the data from the machine or review with a specialist I am not sure.

- MY NEXT FOLLOW UP SESSION IS SCHEDULED IN JANURARY 2011

If I am not the only user which was "Prescriped a cpap machine and treatment", I do believe that the manufacturer or who ever is forcing the withholding my access to the information potentially putting my life at risk ... if the writing of this sickness is true.


NOW ... if the manufacturers are providing the software free in AUSTRALIA ... Why can't all users get it ... to monitor their progress to know when to go to their specialist ... not make medical decision

bigk says that:

Resmed DO sell their software to end users in Australia. It is freely available to patients there. It is even bundled with the S9 and I got it FOR FREE from my online DME in Australia upon my Doctor signing a certificate saying I could have it.

SADDLY and for wrong reason other than cpap machine ... I am not from "Down Under" but that is also true for millions of users ...

I am starting to get the feeling of being riped off by who ever is getting distributors not to make the software available and by the manufacturers who are playing the game ... with potentially ... users life at stake if the article published on this sickness are true... which I think they are.

PS: .mike, I will check the Internet site you suggest later today... but the objective is to be "LEGALLY" able to obtain the software to monitor the treatment (and not to adjust the use of the machine).

Thanks to all

Dudu60

[unadog]

Pragmatism has a lot going for it.

What is the goal? To get healthy? To fix the system? Social justice?

I'd suggest that near term, you do what you can to take charge of your health and get better. That will leave plenty of time long term to fix everything!

I think we all share your frustration. But there are limited hours in a day, and many competing demands for our limited energy.

Good luck!
Michael

[coreyg]

If you care about legalities buy the Sandman auto with software. That's what I did because of Resmed and Respironics policy on software sales. The sandman is a great system and the graphs are pretty good. My issue with the sandman graphs was being able to tell when the Hypopneas and Apneas happened during the night (they have the same marker for both so you didn't know which was which) and it didn't show you how long the Apneas were. When I bought it, I only had a data-less system and I didn't know my HI was between 15 and 20 each night so I had no idea I'd want to be able to tell the difference. The S9 does give you more info (and that's why I bought an S9 to replace the sandman) but I'd guess that all of the manufacturers will improve their data collection on their next model so you can always wait for one that will sell the software.

And my AHI did NOT improve when I went to the S9. My AHI improved when I got feedback on mask leaks and I was able to find better masks.

-Corey