CPAP modems and remote changes to your settings without your knowledge

[archangle]

We need to be careful on this issue.

Used properly, there are significant advantages to the cell modem function on CPAP machines.

• The doctor/DME can easily review the patient's data, although the data is limited compared to what the SD card data does. We are always berating the doctor/DME for not doing this now.
  
  A good DME or doctor can check, see the patient is having leaks, central apneas, high AHI, and solve these problems much better with the use of a cell modem. They can even see a mistake has been made in the machine settings and fix it.
  
• It's much easier to make pressure changes the patient DOES want to have made.
  
• The insurance compliance process is much easier.
  

We do need to be sure to not spread unnecessary FUD (Fear Uncertainty and Doubt) and get people so paranoid that they unplug the modem when it's not to their benefit to do so.

I guess maybe we should gather some data. We have enough tinkerers who are still "on modem" that we would probably know if "auto reset every modem night" is the standard. We should ask those tinkerers with modems and compliance checking to verify that their changes do stick.

If they've effectively locked out modem patients from making their own changes, we need to know that. However, the modem system does have definite advantages for the patient if used properly. We should not throw this baby out with the bath water until we know the details.

Hopefully, the modem based system has error checking so a bad cell phone connection doesn't end up setting your pressure wrong. Unfortunately, I don't have that much confidence in the big corporations. They do a lot of really dumb things with computer security and reliability. Just look at Windows 8, the credit card data breaches, etc.

[robysue]

We need to be careful on this issue.

Used properly, there are significant advantages to the cell modem function on CPAP machines.

• The doctor/DME can easily review the patient's data, although the data is limited compared to what the SD card data does. We are always berating the doctor/DME for not doing this now.

The on-line program that Resmed is pushing the DMEs to use is something called EasyCare Online. And the EasyCare Online tutorial does demonstrate that you can generate a summary "therapy report" for data downloaded directly from the modem attached to a patient's machine; these summary reports look more like the summary pages of an Encore Report than the summary efficacy data from ResScan---there are bar graphs for each day's AHI, 95% leak rate, and 95% pressure level.

But the detailed EasyCareOnline reports (which look very similar to a Rescan Detailed Data report with daily graphs) are available only if the data from an S9 AutoSet or Elite is downloaded from the SD card. In other words, the DME can't generate a Detailed Data report if the data is transmitted through the modem. And another thing that I noticed when reading the EasyCare Online tutorial was that the wave flow graph was NOT shown in the Detailed Data Report. I don't know if there's an option for the DME to use if they want the wave flow or not, but it's clearly NOT there on the example of a Detailed Data Report. Also the ResScan flags for the apneas that show how long they lasted are replaced by simple tick marks in the Events Table.

I've gone through the Resmed EasyCare on-line training guide and captured these two screen shots of the standard "therapy report" generated from the data that can be downloaded through the wireless modem attached to the machine:





You'll notice there's not much here. The AHI is broken down AI and HI by day, but on any individual day, there's no way to tell how much of that AI is CAI vs. OAI. And those numbers off to the left seem to be averages for the entire viewing period---i.e. summary numbers.

If this is what Resmed wants the DMEs and docs to buy into, it's a step backwards in my opinion. And the potential for finding a way to prevent us, the patients, from seeing anything that's not on the patient oriented SleepSeeker is pretty high.

[archangle]

If this is what Resmed wants the DMEs and docs to buy into, it's a step backwards in my opinion. And the potential for finding a way to prevent us, the patients, from seeing anything that's not on the patient oriented SleepSeeker is pretty high.

I wonder what the modems can send, and what they do send, vs. what the cloud based crapware displays.

I also wonder if the next round of CPAP model machines might actually end up collecting less data. We already know they consider their customers to be the DMEs and doctors, many of whom hate CPAP data and prefer to use in lab $leep te$t$.

[robysue]

If this is what Resmed wants the DMEs and docs to buy into, it's a step backwards in my opinion. And the potential for finding a way to prevent us, the patients, from seeing anything that's not on the patient oriented SleepSeeker is pretty high.

I wonder what the modems can send, and what they do send, vs. what the cloud based crapware displays.

Given what I've read in the EasyCare Online training materials, I strongly suspect that the machine transmits only the summary data that is stored in the machine's internal memory and none of the data written to the SD card.

I also wonder if the next round of CPAP model machines might actually end up collecting less data. We already know they consider their customers to be the DMEs and doctors, many of whom hate CPAP data and prefer to use in lab $leep te$t$.

EasyCare OnLine doesn't bother with displaying the Flow Rate data in the detailed data reports that can be generated by downloading the data from the SD card. So it seems likely that it's only a matter of time before Resmed decides to drop recording that data to the SD altogether.

[SuperSleeper]

We should not throw this baby out with the bath water until we know the details.

I understand your point.

That said, I think in this case, we should throw the baby out with the bath water until we know more of the details.

What the modems can do now is take control away from the patient and give it to the medical professionals. Will doing that help some patients? Yes, of course, especially those who know little about their own therapy and must rely completely upon medical professionals. Is that any reason to implement a modem/wireless/cloud-based system for all future CPAP machines which enables someone else to control my therapy with little or no patient involvement or perhaps even no patient notification or awareness of what's going on? I don't think so.

Even if you look at all the current data being sent and find out that they're not doing anything that we would consider to be "bad" or even if they aren't all configured to re-set to the script's settings each night, that's no reason to believe that they can't or won't do that now or in the future. Technology has a way of becoming more configurable in time and at some point it could be easily misconfigured or used to thwart a patient's own therapy changes, even if that's generally not happening much now.

We're always talking here about the "medical mafia"-- where these people do anything for a buck and have no qualms about being dishonest or misleading to make more money. That's why they try to retain complete control over the market and their patients. So why would we let them off the hook and give them the tools to do what they please with ease when it comes to adjusting our CPAP settings remotely-- potentially without our knowledge, consent or notification?

I see this as a trend. It's not the technology itself that is bad, but the way in which they want to use it. We need a balance, but the trend with this technology is not balanced, in fact it's leaning in the wrong direction, I think. If the technology can be used to further enhance patient control and empowerment, while at the same time enhancing the efficiencies to get data to doctors, insurance companies etc., I would more readily accept it. But it sure looks like what's happening is one-sided-- it's geared towards the empowerment of medical professionals by enhancing and strengthening their control, not our control as patients.

The more complicated systems become, the more opportunity for abuse there is, both intentional and unintentional. That's why the more complicated things become, the more vigilant we need to become to protect our privacy, our rights as patients and our ability to control our own medical treatment. Before the technology moves forever out of our control, we need to fight this one-sided trend unless and until safeguards are in place to address these patient-centered issues.

That said, "contraband" or "off-the-radar" hacks and software packages created by patients (hello SleepyHead) may eventually counter-balance this trend by empowering patients to hack into the modems and "take back" control. But as expressed previously in this thread, that level of "hacking" into medical devices is likely to be viewed as a criminal offense given our government's ongoing obsession with "protecting us from ourselves".

[archangle]

We should not throw this baby out with the bath water until we know the details.

I understand your point.

That said, I think in this case, we should throw the baby out with the bath water until we know more of the details.

Well, I can think of several people whom I wish were thrown out with the bath water when they were babies.

I will recommend that anyone who is tinkering with their own pressure should be checking their data with software and should keep an eye out for unplanned pressure changes. If something seems wrong and they have a bad night, they should check their data. Doubly true if you have the modem.

If you're not on compliance check, and aren't dealing with a DME or doctor who is checking the data via modem, you should definitely remove the modem.

[archangle]

Given what I've read in the EasyCare Online training materials, I strongly suspect that the machine transmits only the summary data that is stored in the machine's internal memory and none of the data written to the SD card.

I got the impression from somewhere that there was another wireless ResMed program that transmitted the summary data and detailed data, but not the high volume data. I don't have a reference handy, so it might not be true.

Either way, I agree the current situation is dismal.

[Galactus]

Not to be antiparanoia or heaven forbid the voice of reason, but I think you are looking at this incorrectly. They, The medical Mafia (love the name) don't need to add any technology like modems or SD cards to take power away from patients. They could have zero technology and do it. Case in point, car manufacturers require an investment in a data programmer to reprogram the on board vehicle computers. With that very same low tech, the PAP manufacturers could just simply remove the control panel and settings from the units we receive and have the Docs and DME's buy a $10,000 "programmer" just to set the systems up and they then give us machines we can't do anything with. Zero technology needed and all patient empowerment is gone. Just my humble opinion.

[PsychoMike]

I don't know how the laws are structured elsewhere, but when it comes to your health, AFAIK, medical providers are supposed to have the patient's consent prior to starting or altering treatment (unless there is implied consent...i.e. the patient is unable to answer but is assumed to agree to treatment if they were able to). If we decide not to go along, they chart it as "AMA" (against medical advise) to cover their butts and move along.

The potential for abuse via modem (either my accident, intentional act by a medical professional or malicious fun by a hacker)...especially when it comes to such a critical thing as breathing when you sleep...would give me pause when it comes to having a modem equipped machine.

I'm not saying that technology is bad or DME's can't be trusted...but when it comes to my health, I get the final say. If anyone wants to take that away (or put me in a position where that can potentially be taken away), I think I'd have a very good reason to be hesitant.

[SuperSleeper]

...the PAP manufacturers could just simply remove the control panel and settings from the units we receive and have the Docs and DME's buy a $10,000 "programmer" just to set the systems up and they then give us machines we can't do anything with. Zero technology needed and all patient empowerment is gone. Just my humble opinion.

Good point, but that would assume that the manufactures would even care whether or not we tinker with our own settings. I don't think they really care one way or the other. As Archangle, said: "The medical mafia mindset is that no patient could possibly want to change the settings or know how to do so".

Therefore, I doubt they will cause "their customer" (DMEs primarily) to purchase such an expensive "programming unit" simply to thwart the end-user (us). Too much at stake - they would risk alienating "their customer" (not us, but the DMEs).

Their motivation comes from the love of cold hard cash. They want to make more of it. And unfortunately, they think that the medical professionals (who are viewed as their customer) will be more likely to prescribe their particular brand of CPAP if it's viewed as more efficient or better for the DMEs, insurance company, sleep doctors, etc. We as patients are way, way down on the food chain for them to market directly to us as their primary customer. They think we're too stupid to even vaguely understand the the concepts behind proper CPAP titration and treatment.

So, a modem-enhanced system embedded into a CPAP will sell better, (make more profits) than one that is not, as long as customers (DMEs) view it as better for maximizing profit.

It's the same reason why unscrupulous DMEs will distribute a dumb brick (non-data-capable CPAP) to a patient over a fully data-capable CPAP. They make more money by distributing a brick, but that is clearly not the best solution for patients.

Seldom does the medical mafia just outright lie, steal and cheat in order to "stick it to CPAP users". Nor is there an outright conspiracy to harm the health of patients and keep them in the dark regarding their therapy. Rather, the medical mafia has a history of disregarding what's in our best interest at times simply because that's what's more profitable for them. Again, the love of money.

That said, that same love of money can result in conspiracies, especially between the primary players in the medical mafia realm. For instance, as a DME, you can't simply become an official ResMed dealer without first conspiring with ResMed to certain price-points when you sell to end-users (DMEs can't price a ResMed unit below a certain level, for instance, or they risk losing their status as a supplier of ResMed products). That's a conspiracy designed to maximize profits at the direct expense of the patients. It is a legal contractual conspiracy, of course, but a conspiracy nonetheless - designed to maintain high profitability for both manufacturer and distributor.

So, the deck is stacked against patient empowerment, and the reason is the love of money. We need to remain vigilant and assert our opinions and continue to yell that we (the patient) are the real "customer" of the CPAP manufacturers, not the DMEs.

As patients, we need to educate enough folks to become a growing economic factor when it comes to CPAP features like these modems. We should insist upon getting data-capable CPAPs from the medical mafia that do not have one-sided, mafia-empowering modems.

Money talks, and ultimately, we as patients are the ones who pump money into the medical system. This is where I think the CPAP manufacturers are making a huge mistake when they talk of their customers as being "DMEs and sleep doctors". Face it, if the majority of CPAP users would refuse to accept dumb bricks from DMEs or if we refuse to accept CPAPs with modems, then this will channel more of our economic power into the patient-empowerment movement.

We already have the power... we just haven't used it as a group effectively in the past. Apnea Board was created in order provide a place where patient-empowerment could be enhanced and encouraged. If we can't help educate patients here to take control of their own sleep apnea treatment, then I'm afraid we're going to lose ground against the medical mafia.