Posted by: Jan | June 19, 2010

The Importance of Having Data

On the Sleep Apnea Support Forum this week, I’ve been watching and responding to a thread called  “severe sleep apnea patients!! Need help” located here.   A poster named “Sister” posted that she was empowered by what she was reading in the forum, and went exploring to find out if the Resmed Elite she’d had since 2006 (four years!) was data capable.  To her surprise, it WAS data capable, although her DME provider tried to deny that fact.

The DME provider tried to tell her that accessing the data would void her warranty.  What a load of hooey!  First, accessing data does NOT void any warranty.  Secondly, these machines only carry a two year warranty, already long-expired.  Thirdly, Sister was only trying to access patient data anyway, not clinician’s data.  There was no risk of her accidentally changing the settings or causing any problems to the machine.  

The real shame of this perfidy is the fact that once Sister did access the data she learned that her AHI was 17.5.  It should be well below 5.0.  So this means that for who knows how long, she has been getting very poor therapy.  I would also assume that there has been no follow-up from her sleep lab physician or DME in the past four years, because clearly nobody looked at the data and noticed there was a problem. 

She should have been instructed from the beginning how to check her data, so that when her AHI’s crept up to an unacceptable level (assuming they were ever within an acceptable level), she could have consulted with her sleep professionals to improve her treatment.  Instead, for as much as four years, she has been receiving sub-optimal therapy.  On CPAP, she was still experiencing significant OSA.  

This really makes my blood boil!  The insurance company may have looked at compliance data, but probably cared less if their investment of a few thousand dollars was EFFECTIVE for the patient.    The sleep lab that failed to follow-up enjoyed her money, but failed to make sure that the treatment worked for her and continued to work for her in the long term.  The DME has probably been enjoying her money for replacement supplies and the initial purchase, but they never made any effort to see if the treatment was working for her.  Perhaps  Mr. DME was too stupid to even realize that Sister’s machine was data capable (if he was smart, he could have charged for downloading the data to report to the sleep doc on a regular basis), rather than what he seems to be—a malicious liar who tried to thwart Sister’s efforts to take control of her own treatment. 

Folks, we on CPAP have to be our own advocates.  The reality is that WE are the only ones who care if we are getting effective treatment.   Clearly the insurance company, sleep professionals and DME don’t care unless it lines their pockets.   WE are the only ones harmed by ineffective treatment.  But without data, what can we do?    How can we know, and how can we advocate for ourselves? 

XPAP patients must have and use data capable machines!

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Responses

  1. As far as I can recall, in five years, no one has ever checked any data accumulated by my machine. Some of the DMEs would not have known how.

    It must have been assumed that I would ask for help if needed. As it happened, I had more trouble changing insurance companies and finding new providers as required than with my equipment.

    As I try to upgrade, no one is giving me much instruction. My doctor does not actually care what machine I use, as long as I use it. My DME asks me what I want, and offers to provide software. But I had to learn about different machines in order to answer that question, and where do I go for that?

    I asked at cpaptalk.com, and read up on the Resmed machines at their website. I have no idea what other options are, or if I have other options. I got tired of asking, and there’s so much to know!

    In the end, I will get a data capable machine within the week, and I wonder what I will make of it all.

  2. “It must have been assumed that I would ask for help if needed.”

    That’s my point. Sister had NO idea that her AHI’s were not under control until she saw her data. So why and how could she ask for help?

    I think that DME’s and sleep physicians are being terribly irresponsible if where is no follow-up. It shouldn’t be the patient’s responsibility to figure this out, and most cannot or will not. Imagine that if the compliance rate for CPAP is already as low as 50% and another 50% of those who are compliant do not check their data, there’s a tragically low percentage of people with OSA who are getting optimal therapy. Yet the sleep doctors can be smug about the fact that they are “helping” so many people.

    Even though my sleep clinic gives everyone data capable machines (PR S1’s), they make no effort to teach people to access the data on the LCD which is very limited and none at all for the more detailed data. They do a single followup about a month down the road, then say “call us if you need us”. How are people to know????

    The same HMO that runs the sleep lab has a comprehensive asthma management program. They call me on a regular basis to check in, and encourage me to use my peak flow meter regularly not only to manage problems but to catch problems early before they become bigger problems. It doesn’t make sense to me that they wouldn’t do the same type of follow-up on CPAP.

    Watch for my next post. I will post a bit about how to use the data you get from your machine. Remember, I am not a professional, and you need to DEMAND that your sleep care professionals work with you on this.

  3. Frankly, we are being better helped by other “apneans.”
    And wow, I had no idea that other health issues were cared for so intensively. I am fortunate.

    CPAP therapy is in its infancy. Nobody knows all there is to know, not doctors, not DMEs. Not patients. The changes are still coming along fast and furious. But I do not think it’s to early to demand better care.

    Doctors don’t know the hardware, they know more about diagnosis. They are aware that different machines exist, but not any details.

    As I waited to be helped at one DME location, I heard the same employees that brushed me off also failing to help other customers with other products. I thought they meant well up to that day, but they knew so little! Worse, they didn’t care. I haven’t been back.

  4. Good for you voting with your feet! I hope you told them why, hopefully in writing.

    In my state, at least, the DME providers must provide an RT who explains equipment use and follows up with patients. But few do more than pretend. The largest DME provider around (and the ONLY one my HMO covers), Apria, insists on mailing equipment and supplies to patients rather than interacting face to face, and hidden in the receipt you sign is a statement that you’ve been counseled on the use of the equipment. I’ve learned to draw a line through that statement before signing.

  5. No, I didn’t think to let them know, in writing or otherwise. And I won’t bother.
    I don’t know if it’s just me, but I keep running into complacency so large that customer complaints bounce off. They take care of customers, and they do it their way.

    Nice job, finding the fine print. Bwahaha..

  6. Nice post, keep up the good work.

    Mike, http://somebodyhadtosayit.com

  7. I have a question. I have been on CPAP for 5 years. As I was reading your blog, I was curious about my own sleep study. The last one was performed in 07, one year after my initial study when I was diagnosed with OSA. It seems that my doctors are concerned about sleep apnea but not the quality of my sleep. The last study was a full night CPAP titration and the report shows a sleep efficiency of 61% with normal being 85%. Can you tell me what this means and what can be done about it?


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