- Hey guys, today I wanted to ask you all
a really simple but important question.
And that is, how do you guys feel
about that major CPAP manufacturers
like ResMed, like Phillips,
collecting and using all your sleep data
without getting your permission to do so,
in that, you don't sort of opt into it.
In fact, you can't even opt out of it.
I just wanted to see what you all thought about that
and see what your feedback is regarding this.
So I'd love to know what you think.
Drop a comment in the comment section,
let's have a discussion about it.
Today's video, I'm just gonna chat a little bit about it.
Maybe discuss with you a few things
you might not have thought of regarding the actual data
that you're giving to them.
So I know some of you from an older generation
might not sort of understand how it sort of all works,
but basically when you go out
and buy your ResMed AirSense 10,
inside it you have this little cellular modem.
And that has the ability to send all of your data,
how you're breathing, how many apneas you've had,
how you used your machine, the settings, everything.
It sends that up to their cloud, not the rain cloud,
the computer cloud,
which is basically going into ResMed's servers.
So they can collect it all, use it, analyze it.
Data's like gold for them.
And they're just amassing huge amounts
of sleep data, huge amounts.
It's not just sleep data as well,
it's health data at the end of the day.
I think that's important to note.
It's not just them checking out your dreams,
although I probably wouldn't wanna dive
too deep into my dreams, that's for sure (laughs)
Now, it's how you're breathing.
It's your medical data that they're getting.
And when you get your machine,
it's not like, "Oh, hello, sir, would you like
"to be part of this service that we have?"
No, you're automatically stuck with it.
You can't go into your settings there
and "No, I don't want you to monitor me over nighttime,
"stay away from my dreams."
(laughs)
No, it's none of that.
If you want to disconnect your modem,
I'll put a link in the description
and you can just follow it step-by-step.
It's quite easy to do so.
It's a shame that there isn't a little button
or something that you can switch to turn it off,
or even just pull out the card, but there's not,
you've gotta take it apart and take it out.
But I'm gonna share with you some, just some insights,
some things I've found on the web regarding the data,
you might find it interesting.
And then share with you a little bit about
what I think about it, put it that way.
So let's talk a little bit about ResMed.
So there were the first in the industry
to put a cellular communication chip
inside every sleep apnea device.
AirView, which is one of their sort
of cloud platform apps captures nightly sleep data
from more than 4 million sleep apnea
And CIPD patients via the cloud over form in.
Now this is done a while back.
So that would be over 20 million more now.
There'd be huge,
huge amounts of data collected every night.
Another part of Air Solutions is
ResMed's patient engagement app, myAir.
You know, the little app you have on your smartphone,
many of you will have that.
Worldwide 1300 new patients sign up for myAir every day.
And that would be more as well.
I reckon that to be double that.
Leveraging deep neural networks
and sophisticated virtuous feedback loops of learning
to discern actionable insights is the key to success.
(laughs)
The AirView platform captures 1.5 billion,
billion, thousand million nights of medical sleep
and respiratory care data, enabling analysis
of large patient populations to glean insights
that influence standards of care
and patient outcomes, okay.
They're always gonna make it about the patient
and they're not out there.
You know, like Google is not out there to do harm.
Like Amazon's not out there to do harm.
We're the good guys,
they're out there to help you sleep better.
Although data collection alone
would make ResMed a standout organization,
there are tricky issues at play
when it comes to gaining access to that data,
tricky issues at play.
That's where user focused design comes into play.
Now get this.
The key of user adoption of connected devices is really not
to give them an option.
You see that?
The key to getting people to use this cloud
and give your data is to not give them option not to.
Which is what they've done.
You see, that's the key.
If you want it, don't give them an option to turn it off.
Let's say you do it.
They noted that every moment a device maker puts a barrier,
they call it a barrier.
It's not a barrier, it's an option.
In front of a patient,
presents a risk that patient will abandon that option.
There's a chance if you ask someone,
can we you have your data?
They might say no to that.
So don't give him the option.
You lose health adopters every time you ask a patient
to do a step, select the network or flip a switch,
you're asking them to do something
before they see the real value.
The patient doesn't understand the real value
of us having their data.
They don't get it.
They're not smart enough
to make their own informed decisions
about who should use their data.
So we'll make them for them.
All the patient has to do is go to sleep.
Farrell said, that's make Farrell the CEO.
And he's a very clever guy,
but all you gotta do guys is go to sleep.
Don't worry, we won't touch your dreams.
Not yet anyway (laughs)
Aah, look, but that's a little insight for you
about what's going on,
but basically they're amassing a huge amount
of your sleep data.
And this is why you should be a little bit worried about it.
All right, we'll go into that.
So, this is some of the legal implications of CPAP data.
And remember, this is all sort of relatively new.
So who knows what's gonna be happening five,
10 years down the track.
With advances in technology,
such as the ability to manage CPAP data remotely,
even when a patient is not physically present,
that's the cloud sort of stuff coming in,
comes a changing landscape of liability for physicians,
CPAP providers, so your clinics and patients.
For example, an ITS position paper raises the question
of what happens in the event of a motor vehicle accident.
If the driver is on CPAP
and has CPAP tracking data available?
All right, you've crashed your car into the Mercedes-Benz
and all your sleep apnea data, all your sleep data,
how you're sleeping is all there.
You can get access to it all.
Now when they get the access to that
and it shows that your apnea is not well controlled,
or you only used it for hours the night before.
And they're like, "Oh, he's fatigued.
"He wasn't driving well, he was impaired."
What happens with the insurance company?
What do you think that will do?
It's interesting, it's food for thought, okay.
This is what I wanna read this sort of stuff to you.
If the patient has not been in here to PAP treatment
in the lead up to the accident,
then is it possible that CPAP data could be used
in legal proceedings?
Alternatively, if CPAP data is reviewed
under legal proceedings
and shows a high apnea hypopnea index,
so your sleep apnea is not controlled or large mass leak
then is it possible that the sleep physician
or the CPAP provider could be liable?
The guys who are supposed to be looking after you.
These are all things that sort of need answers to really.
A similar issue could arise where a patient appears
to be adequately managed upon last review.
And so hasn't been followed up
even when the CPAP data was available.
So they've got access to your data 24 hours a day,
and something happens,
then where does that liability lie?
Who's responsible? Not me (laughs)
That begs the question of where does the legal owners sit
with sleep physicians, CPAP providers and the patients
in the event of legal proceedings associated
with CPAP data?
There it is.
All right, so I think the take home there is,
could your CPAP data be used in some way against you
or someone else?
That's the question that we're asking here.
All right, so that's interesting A.
There's another thing here that I really want to mention,
and especially for my awesome US viewers out there,
I know I've got a few fans over there in the US
so I love you all too by the way,
especially those of you from Texas,
a couple of lovely Texans sending a few channel donations.
So you're the best.
So there could be financial legal issues involved
with access to CPAP data.
In the USA centers for Medicare and Medicaid services,
regulate rebates for CPAP machines,
you rebate how much money you get
and where you get a new mask and all that stuff.
Patients can lose access to reimbursement
for their PAP device if they are nonadherent
according to the CMS guidelines,
PAP usage greater than,
they're equal to four hours per night.
So basically what they're saying is that all this data
could mean you lose all your benefits
if you're not doing a great job with a CPAP machine,
but let's face it.
Some of you can't wear it for four hours a night.
Some of you can only manage two or three hours a night
because, you know, wakes you up
and that's all you can tolerate.
So does that mean you should lose your benefits?
I don't think so.
You're still using it.
You're still getting some hours sleep.
But after I read that,
I went down a little bit further and I wanted to find out
what the driving regulations were regarding sleep apnea.
Obviously there's a whole bunch of different states
and countries and regulations and stuff.
And I don't have the time or the energy,
especially with a newborn baby to go and research all that.
So I just did my home state of Victoria,
but I encourage you to go and find out about your own state.
So this is from VicRoads.
I'll put a link to the article in the description.
So VicRoads is our regulatory body in Victoria,
where I live.
So what are my responsibilities as a driver
if I have sleep apnea in addition to notifying VicRoads
about your medical conditions?
So, if you've got sleep apnea,
you're supposed to notify VicRoads,
just so you know, if you're in Victoria.
Whether or not you should do that,
I'm gonna leave that decision up to you.
But I know what I would do.
It is your responsibility to comply with treatment
or advice recommended by your doctor.
Failure to notify may also affect your insurance cover.
There you go.
So now we're getting a little bit further
down the rabbit hole.
Could your sleep apnea data that's in the cloud,
in the server,
be used by insurance companies to deny your cover?
Hmm, food for thought.
So, what are the medical standards
for sleep apnea in driving.
This is interesting, okay.
So VicRoads determines your fitness,
how strongly you are to drive on a case by case basis
in accordance with national medical standards,
medical advice and assessment outcomes are also considered.
VicRoads will request a doctor report
and may also request a report from your sleep
or respiratory specialist.
These reports must be no more than six months old
and address the severity of sleep apnea type and treatment.
So you tell VicRoads,
they're gonna ask for reports from your doctor,
they might also want one from your specialist as well.
And then I imagine once they know you have sleep apnea,
they are going to make sure that you're using a device,
so you're gonna have to continuously provide them
with constant reports, constant updates, all your stuff.
And then what happens if you get off your CPAP machine?
I don't know, you know like maybe you stop using it
or maybe you lose some weight.
Interesting things to think about,
and this is what I wanna throw open
the conversation today.
What happens if I don't provide a medical report?
Hey VicRoads, get stuffed.
The medical report must be completed
to ensure medical review to assess your fitness to drive.
If you do not provide the medical report,
VicRoads will be unable to complete the assessment
and is obliged under law to suspend or cancel your license.
Now, obviously if you're a professional driver
or some sort truck driver, train driver, bus driver,
all that sort of stuff,
you should definitely be going along
with this VicRoads stuff, and doing the thing.
'Cause you could be legally responsible here
if you have a crash or something like that.
But if you're just the average Joe driving
to work each day, driving your kids to school
then you got to think long and hard about whether or not
you wanna be providing this information to VicRoads
or New South Wales Roads or wherever you live, right?
I'm not gonna tell you what to do or what not to do.
You can make up your own minds.
What else have I got?
All right, so lastly,
I just gonna open up the ResMed privacy policy.
It was a lot shorter than what I thought it was gonna be.
I'm not sure if it's the full getup or not,
but this is the privacy policy on their website.
And I just wanna bring your attention to a few things.
Privacy policy for those of you who don't know,
it's like how they use your data, how they collect it,
what they use it for,
what personal data do we collect about you
and how do we collect it?
And I'm reading through going,
where's the part where they say,
we collect all your data from your CPAP machine?
Where is that? I couldn't find it.
And I'm reading through and they collect your name,
your date of birth, your age, your telephone number,
your health insurance information, all this other stuff.
Blah, blah, blah, blah, blah.
And then at the very bottom it says any other information
you provide to to us.
And I'm like, "Ah, that's it."
So they don't even say in there,
by the way, we get your information
and your sleep data directly been to us,
they say any other information you provide to us,
it's their way of saying
you've provided the sleep data to us.
You provided it to us.
You gave it to us.
Even though you had no option to not give it to us,
at the end of the day, you gave it to us, bad luck.
And then you go down a little bit further and it's got,
how do we use your personal data?
And once again,
I don't know if it's got everything in here,
but you got newsletters, content, blah, blah, blah,
technical support, sleep testing, risk indicators,
treatments set up and support.
And then you go down the bottom and it says
to communicate with your health insurer
and healthcare providers, that's interesting.
And to fulfill our legal regulatory
and risk management obligations,
including establishing, exercising,
or defending legal claims and acting
as a medical device administrator.
You do have data rights with ResMed's.
So you can email them privacy@resmed.com
and you can request details of the personal data
they hold about you and how they're processing it.
You can have it rectified or deleted.
You can restrict them for processing your personal data
and you can stop unauthorized transfers
of your personal data to a third party.
And you can also have your data transferred
to someone else if you want to or to yourself.
How about that hey?
Why don't you email them and ask them,
"Hey, can I have back what belongs to me?"
One more thing guys,
just before we go is obviously all this data is up there
in the cloud on service.
And we know from recent history that no matter
how good a company is with their security,
data breaches happen.
So if you Google data breaches of major companies,
you know, the list will be pages and pages long
because it happens,
happens on a daily basis data breaches.
Government agencies, big tech firms,
there's data breaches all the time.
So what happens if there's a data breach of ResMed's service
and all of a sudden billions and billions and billions
of medical data is out there,
out there for health insurers,
out there for life insurers,
out there for the world to see.
These are the things you guys have got to think about.
You know, it might happen, it might not happen, who knows?
But at the end of the day, these things do happen.
And if you've got a chronic medical condition
that generally lasts your whole life,
do you want the world knowing about that?
Do you want your employer knowing about that?
It's up to you guys.
But anyway, look, I just want to throw it out to you guys.
I wanna hear your feedback.
Get down in the comment section.
Let me know what you think.
It's the world we're living in at the moment.
You know, everything is data.
We spend all our lives on our phones, on our computers,
on our CPAP machines.
And all these companies want is they just want everything.
They wanna know everything about us
and health data is just becoming massive.
That's why Apple is loving their little watches you know,
they get all that health data, your heart rate,
your fitness, everything like that.
And you just don't know how it's being used.
That's the thing.
It's very hard to know how it's being used.
Is it being sold off to other companies?
Are they big life insurers spending billions of dollars,
buying this stuff from Apple and third parties
and all this sort of stuff.
Anyway, I'm orphan, I'll do that.
I'm sorry, I really am.
I don't mean to waffle.
It's just, I get excited about this sort of stuff.
I'll get emotional.
I might start doing some vids on
how to take out your modems
and stop them spying on you if you want.
(chuckles)
Until next time guys look, take care.
I've got some good reviews coming up for you also.
If you liked the video, thumbs up,
if you didn't like the video, thumbs up.
And yeah, look, if you wanna subscribe, you can,
if you don't, that's fine too.
I'll leave it up to you.
The choice is yours.
(chuckles)
You can opt out of that one.
All right guys, have a good day.
I'll catch you next time, bye.