Reasons for Restricting Information

What are the reasons for information restrictions and why do we seek to bypass them?

I don't have anyone monitoring my machine or compliance in any form so much of the following is based on impressions gleaned from the experience of others.

Many of the CPAP machines go online daily to send data to the clinic that manages them.

Most machines also have the capacity to save the data to an onboard SD card which can be accessed with the right software.

The clinics don't usually go out of their way to provide data to the patient although I believe there is a simplified summary available online.

Neither do the clinics take the time to provide training or support for patients to understand what any of it means.

Once the patient has access to their data most of it is comprehensible over time with a bit of experience and logic.

So why do the clinics try to restrict access to the data?

The sleep clinics would probably tell you they are reluctant to give information to the patient because they need to set up and manage the therapy for the patient and they are responsible to exercise authority or control on behalf of some or all of the following,

The patients Doctor

The patients Sleep specialist

Their own employers

The marketing companies they represent

Their own legal and medical obligations

Their own insurance company

National medical authorities.

Government authorities

The patients Licensing authorities

The patients employers

The patients insurance company

It's not an envious position to be in, answerable to just about everybody.

None of those on the above list would be likely to encourage patients to be involved in their own therapy so it follows that they wouldn't support distributing information or data that might facilitate that.

This attitude is perfectly understandable and would make sense if the sleep industry were more effective at the essential aspects of diagnosis and therapy but it seems like they have a long way to go and many patients are slipping through the cracks at the moment.

Many CPAP users view the control measures and lack of information as business policies by the sleep industry applied primarily to protect and increase their cash flow.

This would probably be ignored or at least tolerated if the patients felt that they could actually get the kind of services and help that they so desperately need.

I also get the impression that most patients believe their doctors have very little understanding of CPAP details or issues and many Apnea sufferers have serious doubts about the competence of the staff at their sleep clinics.

These factors can provide compelling reasons for CPAP users to want to learn about their equipment and outcomes so that they will be better able to understand and manage their own therapy.

What are the dangers of going down this path?

Should the clinics provide more information and data to CPAP users?

What alternatives are there?

The first on line CPAP supply store that we got my wife's machine from 4 years ago or so was willing to look at your machine data if you zip the files and send it to them by e-mail for review. I believe they limit that service to one year. They also told us "off the record" about SleepyHead and suggested we might want to use it. They also showed me how to make changes to the machine using the Clinical Menu.

The place I bought my machine from was more no frills. They made it clear they don't want to review your data, or provide ongoing advice. They did offer to set up the machine based on the sleep study report that was used as a prescription. I told them no, and that I wanted to set the machine up myself, and to just ship it to me the way it comes from the factory.

I also believe some bricks and mortar clinics will do a similar thing and show you how to make adjustments.

The other think to consider is that some, perhaps many, users do not want to take any responsibility for making the adjustments. They want the clinic to do it all. So perhaps there is a place for both types of service. One that provides the full meal deal, and others that want the bare bones...

Personal opinion here. In the past, doctors were the unquestionable authorities on all health issues. Doctors told you what was wrong, what you should do and sent you out the door. It hasn't changed that much really. There is a lot out there about the importance of patient perspective now but it still hasn't changed much. It should be always and forever about the patient. Until we, as patients, become educated and engaged it won't change much.

I went to college after my kids were older. In an algebra class the first day the professor gave a quiz. Most of us failed since we hadn't even covered the stuff yet. He told us that unless we got a B or better on the quiz, we had to drop the class. That way he got paid the same but only had a few students who had "voluntarily" dropped the class. Same way for many doctors and such--get in, get out and be done. If patients don't ask for information, it isn't given.

Climbing off my soapbox now.

"Once the patient has access to their data most of it is comprehensible over time with a bit of experience and logic. "

-- We need to remember that a lot of people are not functioning terribly well when they are finally diagnosed, and logic may be in short supply. Also, the experience needs to be very well-informed, and how is the average patient supposed to know what even qualifies as good information?

We here on this site do make an effort to provide only good, solid information, so it's a good place to start, but it is far from sufficient. I'm a patient who has spent years educating myself, and the more I know, the more I have learned how LITTLE I actually know.

Also, different people have different capacities for technical information and learning material otherwise foreign to them -- most of us do not have the fund of information that would underpin this new learning. On the other hand, there are plenty of folks with a background that would be helpful and they could absorb and analyze the information just fine -- just remember that this issue is not "just" a matter of air pressure.

So while I am absolutely supportive of patients being able to manage their care as much as possible, I have learned over many years that mucking around with pressures/machine types without REALLY knowing what you're doing can cause MORE HARM than good. I have been told that a change in pressure of 0.5 is significant, so changes need to be carefully titrated and slowly, with observations after each change, if people do make an effort to learn and adjust their pressures themselves if they do not have access to sleep physicians.

There is a terrible shortage of board-certified sleep physicians, they are retiring faster than we are training new ones, and the ones we have tend to be clustered in certain geographic areas, leaving millions of people without access to any. In my case, there is one, but he was unhelpful about my complex apnea and I had to go to Boston to see The Man who's the specialist in that.

So in short, about own-care? Your results may vary. Also, Sleepyhead is amazing and it is "free" - but I urge people to realize it's more "shareware," where you donate what you can afford to the amazing man who has dedicated massive hours and work to create it, and who has apnea himself.

Breaking news: SleepyHead has shut down just very recently, which is a tragic development, and I hope very much that there can be a suitable resurrection.

Thank you for your response BrainsNeedSleep, there are a lot of good points in there.

It's hard to get a fix on the comprehension of Apnea sufferers because tired is not the same thing as dumb although it may well equate to the same outcomes in many circumstances.

I struggle to know what day it is most of the time and SleepyHead is nice and colourful and has interesting charts but I'll just walk away and have a closer look some other day because I'm definitely not the sharpest tool on the shelf but I do watch and think, when I'm able, and even remember some of the stuff I read, so eventually I get enough of a general impression to enable me to make minor adjustments or decide what I would like to try next in the endless process of hoping to make improvements faster than things are falling apart.

With very severe Apnea I cannot sleep without the CPAP machine and I am often a considerable distance from any trained help, so I need to be able to fix urgent problems myself.

Yes there are risks but in my view they are minor compared to the risks involved in being totally dependent on outside help.

It's true that .5 would make a difference but I know that in general I could change mine from the current setting of 12 up to 14 or back to 10 and still be relatively comfortable.

If I set my pressure above 15 it might invoke a few central events and below 9 there would be more obstructive events but even at those extremes I would still be better off than not having the machine.

The other issue for Apnea sufferers is the apparent failure in communication between patients and professionals that so often seems to cause misunderstandings, delays and unsatisfactory outcomes.

I accept that this is an industry in transition and these views may well be unwarranted in the future.

Patient education is a major part of my role. In general the better educated the patient, the better the outcomes. However, I know that this view is not shared throughout the industry. It is also worth remembering that some people are unable to understand much due to language or intellectual hurdles, and other people really want to know as little as necessary, so I try to tailor what I do to suit the needs of each individual patient.

I recently worked with other dedicated individuals on a women's fact sheet about sleep apnea. Patients were brought on to look at the language used so it would be understandable and not doctor-speak. It was amazing and frustrating that the medical community thought they were speaking in a way that made sense to us because they were so used to using the "big" words and abbreviations that they didn't understand not everyone would get it. I hate the term "dummy down" when talking about making language easier to understand. We aren't dummies (neither are you Gremlin). We are sleep-deprived. We don't speak doctor. Asking questions and for information to be repeated until we understand it is perfectly okay. Asking for that information to be written so that we can read it again and again if necessary is fine also. And again I say--WE are the reasons for the research, the reason doctors and clinicians are here, and why this forum exists. Why, then, should we not be listened to? Guess this is off the main topic here. Sorry.

My Dr. uses a coordinator that fits the masks and explains machine operation. She is extremely busy and has no direct phone #. I insisted on at least an email. That is helping me get new fittings/changes during my first 30 days. After that I'm stuck with whatever I have. Or pay myself, not insurance covered.

She works thru sleep clinic and coords that with Drs orders and with equipment supplier. She seems a liaison for patient between Dr., sleep lab, equip provider who arranges/structures my insurance coverage as a 13 month rent to own. I have 30 days to get the right mask, etc to suit my needs. If I don't comply by using CPAP properly (min 4hr sleep) they take it away and I still have to make payments. (I think!) It seemed very confusing at the beginning, but I think I got it. The DME sends my parts as they are needed to replace wear and tear. Cigna covers 80% and DME has my credit card to bill 20 % for my share as needed. On day 15. We'll see how it goes.