A paranoid fantasy???

Folks,

The talk of whether a wifi/wireless connection between the CPAP and the user's home network on a couple of other threads got me to thinking in paranoia mode:

We already know that the CPAP manufacturers do NOT regard us---the actual users of their machines---as their customers. Unlike major drug manufacturers, scooter chair makers, lift chair makers, manufacturers of diabetes blood glucose monitoring test supplies, the CPAP manufacturers do no mass marketing advertising to patients telling them to request an S9 Autoset or a PR System One APAP or a F&P Icon+ Auto with Senseawake. As the "advertising material" on their webs make it clear, the CPAP makers regard the DMEs and sleep docs as their customers instead of us.

And what happens if they decide to use wireless monitoring as the default way of recording data---both basic usage data and efficacy data? Suppose for a minute that the Resmed S10 (or the PR System One Series 70 or the F&P Icon ++) is released with no data card slot and that Resmed (PR or F&P) adds the following kind of language to the advertising aimed at DMEs and sleep docs:

• Why bother with local copies of ResScan and all the other proprietary software that you currently need to maintain and train your staff on in order to track usage and other data?
  
  If you set your customers up with the new S10 with integrated wireless/wifi connection, every morning the data will be uploaded directly to a centralized location at Resmed. We'll analyze the data for you and flag any patients whom you need to contact for follow-up concerning lack of compliance. We'll send your choice of daily/weekly/monthly lists of how each of your patients are doing in terms of compliance. You will never have to phone patients reminding them that it's time to send the SD card back to you---compliance checking will be done automatically every morning through the web. The CPAP machine will contact the Resmed server every morning even if the patient failed to use the machine that night.
  
  If there is a need to track efficacy data as well as compliance data, set your patients up with the S10 Elite or the S10 Autoset. The integrated wireless connection will upload all the data to our server for detailed analysis. Patients with problem areas in terms of excessive leaks or long term AHI > 5.0 will be flagged and we will send you the names and a brief description of their problems when we send you your daily/weekly/monthly report.
  
  If you wish to monitor your patients' data more carefully, we will also provide your office up with a secure log in to our centralized database so that you can directly access the data for all your patients through the web browser of your choice. This will allow your office to see, analyze and print out the data that is currently available in ResScan whenever you need to without the need for the patient to bring in his/her SD card. And should the prescribing physician decide that the therapy settings for a patient need to be changed after analyzing the on-line data, the changes to the therapy settings can be submitted on-line and our server will immediately contact the patient's CPAP machine through its wireless modem and implement the changes immediately. You will no longer need to ask the patient to bring his/her machine in just to change the settings.
  
  Please note that in order to obtain a secure login on our database server, you will need to contact your Resmed representative. S/he will inform you of what necessary information you need to provide to us in order for your practice/business to obtain a secure login to our site.

In this nightmare of a scenario, we the patients are left completely out of the loop. We'll have no way to obtain all the data because it's transmitted rather than written to the SD card. If Resmed is nice, they'll leave the clinician the option of allowing us to see the efficacy data currently available on the machine's LCD and they'll have a "patient portal" that presents much the same limited data. But we'll no longer have any way of getting our hands on the detailed data in order to look at it either in some future version of SleepyHead or a potentially pirated version of ResScan.

My question for the group: How far-fetched does this scenario seem to you?

some machines seem to keep on time without intervention

so how do they do that?

It doesn't sound far-fetched to me. But if CPAPs go the way glucose monitoring has gone, I kinda doubt the scenario will play out. But you never know...

I would hope that HIPAA would require patient consent,
but that depends on interpretation by people who we cannot trust. (based on past experience)
Maybe I will stick to purchasing the models that will make data available to patients.
--Even if Medicare won't pay for it. Too bad Medicare is run by bankers and other thieves.

robysue wrote:My question for the group: How far-fetched does this scenario seem to you?

Sounds like you're describing this: http://www.resmed.com/epn/products/easy ... s&sec=true

Daily, automatic data transmission
Comprehensive clinical insights at your fingertips, that in the past could only be obtained by local data analysis.
Allows you to change settings remotely
You are able to adapt flow generator pressure without the need to make additional patient visits to their home.

It's an interesting scenario. I think the idea of little memory cards is a bit old fashioned, and I wish my machine could dump its data to a file of my choosing via my home network whether I remember to fetch it or not. Memory is very cheap, so the machine should be made to hold weeks of data while I camp or stay at locations with no wifi, then catch up when I get home. If I choose to save my data on iCloud or some other free outside service I could upload and download it anywhere. I can live with the faint possibility of someone reading my sleep data. No one could possibly care about it, and it would be far less embarrassing than those darn sex tapes. So part of this picture pleases me.

I don't think the nightmare parts will come to pass. I can't see Resmed ever wanting to face the liability exposure of having sole access to my respiratory data in real time. I can imagine every malpractice case involving a CPAPer's stroke or fatal heart arrhythmia including a count against Resmed for ignoring some pattern allegedly present in the efficacy data that should have led to a warning. And in the U.S., at least, I feel sure that federal law and most state laws would guarantee patient access to their medical information. Still, this is one more thing to lose sleep over.

Robysue

Boy that's an annoying possibility. But I think that you are really on to something here (and you should turn your fantasies in a different less frightening direction). The problem is not that I care that anyone else knows my data (that's another different scary issue), but that getting cooperation from my sleep guys to first even monitor my data and secondly letting me see it and discussing it with me. I would love someone to review with me what my Sleepyhead data really means, but so far I've been unsuccessful in that effort.

You know what? there are just too many of us with Apnea and as far as I can tell, treatment is just nothing but a "mill". Plus there are so many variations in apnea, treatment machines, settings, masks, and our personal tolerances. I don't see anything making things any better, only worse.

My wife just had a hip replacement, and the way that was handled just startled me compared to the apnea process. Between literature, Doc evaluations, nursing attention in the hospital, follow up home visits by therapists, it was amazing. She knows exactly what's going on at every stage, and she has all the help she needs.

Now that's an apnea fantasy!

Phil;

--Maybe if it could Bluetooth to my computer, and then I could forward compliance to my insurance,
and efficacy to my doctor--if needed. --DME does NOT need this! (cut out the middle man)
I agree that liability might be a bigger impediment to the evil plan than privacy (which is disturbing)

Jay,

So much for the "fantasy", it's now real.

Jeez....

Phil

Jay Aitchsee wrote:

robysue wrote:My question for the group: How far-fetched does this scenario seem to you?

Sounds like you're describing this: http://www.resmed.com/epn/products/easy ... s&sec=true

Daily, automatic data transmission
Comprehensive clinical insights at your fingertips, that in the past could only be obtained by local data analysis.
Allows you to change settings remotely
You are able to adapt flow generator pressure without the need to make additional patient visits to their home.

it may be that our machines already "phone home"

chunkyfrog wrote:I would hope that HIPAA would require patient consent, but that depends on interpretation by people who we cannot trust. (based on past experience)

Canada has Personal Information Protection and Electronic Documents Act (PIPEDA) and my province also has Personal Health Information Protection Act (PHIPA). Both are meant to protect privacy. There are already published accounts of mass reporting of this data to outside agencies by the government without recourse. I agree that it depends on interpretation by people who we cannot trust.

When you see Android running on your AutoSet then the illusion of privacy is over.

Jay Aitchsee wrote:

robysue wrote:My question for the group: How far-fetched does this scenario seem to you?

Sounds like you're describing this: http://www.resmed.com/epn/products/easy ... s&sec=true

This is indeed what started the paranoid thinking.

Right now that wireless contraption is an add on and it does NOT eliminate the data card.

The problem I have with this is the potential to leave the patient completely out of the loop.

I'd feel more confident that the patients wouldn't be left out if there was any transparency right now when it comes to our treatment and our data.

But: The average DME and doc believes we should have NO access to the data. And Resmed and PR and the rest do NOT think of us as their customers. So if the DMEs and docs decide that the way to prevent us from having access to the data is to require a wireless contraption as a replacement for the SD card, does that leave us royally screwed?

chunkyfrog wrote:--Maybe if it could Bluetooth to my computer, and then I could forward compliance to my insurance,
and efficacy to my doctor--if needed. --DME does NOT need this! (cut out the middle man)
I agree that liability might be a bigger impediment to the evil plan than privacy (which is disturbing)

and the DME might well remotely initiate the dreaded "drive home" algorithum if you miss a payment, unless, of course, you have installed the pole lock device.

Might be a "nice" idea for a new product feature for the "customers", but actually implementing it would probably be too much of a hassle for them.

In order to connect an xPAP machine to your WiFi system so that it can send data out to the doctor or DME, it will need to know the security code for your router (assuming you have the security feature turned on, which is should be). This means that either you need to agree to do this and are given the detailed instructions on how to accomplish it or the DME has to come to your home and do it for you (after you provide them with the security code, which you should not). And even if the machine had the smarts to figure out how to connect to my router by itself, I can always block based upon it machine address in the same way that I could block my neighbor's kid who was trying to hack into my system.

And, even if the manufacturers did this, the machine could not report in if you are traveling away from home. Even if the hotel has free WiFi in your room, you would need to get the machine hooked up with the hotel's security key. I have enough problems getting this done on my PC and phone which have full screen screens and the ability to display HTML pages. Doing it with an xPAP machine would be a nightmare (assuming I agreed to do it).

Finally, the whole scheme breaks down for those of us who bought our machines outright by email and only grudgingly carry them back to the doctor for data review. The last time I went in, the doctor's crew couldn't even read my card because they didn't have the proprietary software to match my machine (or Sleepyhead).

So, it is an idea that currently has too many bugs to be universally useful. Might it happen years from now once everything is "smart" and digital security is well beyond the current state-of-the-art, of course. But don't expect that to become common practice in the next years.

I don't know about cpap but in other things someone always comes up with a device or method to work around stuff like that. Remember when Microsoft said you couldn't install a full version of windows from an update disk, well it didn't take long for some geeks to work around that and later they said you could legally do it and not violate your license. I think that was back with either XP or Vista.