DME said no access to my data. True/False?

[SleepyHound]

Hello all! There's so much information on this forum and I've got so much to learn! I am so grateful to all of you who have been so open and honest about your experiences. I am about to be a CPAP'er....had a successful titration study, and my info is being sent to my DME. I talked with someone on the phone regarding what machines they had in stock or could order, what the process is now that the paperwork is being processed, etc. I asked about data collection on the machine, of course the person on the phone said there's compliance data that the insurance company will want in 30 days, etc. I asked about data capability beyond that for me and my doctor to go thru (kept in an SD card or something that can be uploaded)) and he said NO!

He said that once pressure settings are set by the RT, they're locked, and any data that is collected in there is not available to any patients. I can however, request a copy of my data from the DME anytime I want.

I'm trying to do all my research so I won't get bamboozled by DME. The DME location I called is not the actual office I will be going to, and I didn't leave my name or any information, so I plan to ask again when I meet them face to face. He did answer a few other questions, though. They do have the F&P Icon and Resmed S9 available, and said that most insurance companies charge by code, so I am pretty open to whatever fits my needs (which I have verified to be true with my Insurance). I'm straddling the fence between the above two listed machines.

I am also a diabetic on continuous glucose monitoring with an insulin pump and blood glucose monitor that all communicate with one another thru RF. I have FULL access to all the data to the readings, graphs, and different metrics reports at a click of a button online. It really helps to understand how different things affect my blood sugar (food, stress, exercise). It makes me more accountable for my own health changes.

I was a little offended I was told I can't have access to CPAP info when I've been reading all this online...

[nanwilson]

PLease, please get a data capable machine. The info you can get regarding YOUR OWN therapy is invaluable. The DME said "no" to you because they don't get any $$$$$ when you access your own info. All they need to know for insurance purposes is compliance.
Be sure and get the data capable machine you will never regret it.
Cheers
Nan

[Country4ever]

You may already have data capabilities, and just not know how to access it.
Some DMEs are so unreasonable about us taking control of our own treatment. I would be lost if I couldn't access my numbers every morning.
I don't ask my DME or sleep doctor if I "may" access my info. I tell them I do. Period.
It would be like a diabetic having to go in to the medical office to see what insulin they needed that day and get the shot from them. Its just silly.
We need to be in control of these kinds of things.

[robysue]

First find a post by Janknitz. She has links in her signature to a blog with almost ALL of the information you need for your research about machines, DMEs, and billing by insurance companies. Reading her blog should save you a lot of time.

Second, congratulations on NOT getting suckered into accepting a dataless brick by the DME yet. It's always easier to insist on getting the right machine at the start than it is trying to swap out a brick for a full data machine.

Third, here's the short version of what you need to watch out for concerning the machine itself:

• For the Resmed S9: Hold out for an S9 Elite or an S9 AutoSet since these are the full efficacy data machines. Do NOT accept delivery on either the S9 Escape or the S9 Auto Escape since they are NOT full data machines.
• For the PR System One: Hold out for a System One Pro or a System One Auto since these are the full efficacy data machines. Do NOT accept delivery on the System One Plus since it only gathers compliance data.
• For the F&P Icon: Hold out for an Icon Premo or an Icon Auto. Do NOT accept delivery on the Icon Novo since it only gathers compliance data.

Fourth, talk to your doc and see if he'll write the script specifying that the DME is to set the machine up so that you can access the efficacy data. Tell him exactly what you wrote about how you deal with the data on the diabetes and how useful it is. But if this fails and you wind up locked out of the data by the DME, have no fear: As long as your machine is data capable, there are folks here who will be happy to tell you exactly how to unlock your machine and see that data.

[BlackSpinner]

Tell them that you won't buy from people with that attitude and will take your business elsewhere and see what they say. Make sure you have your prescription in hand. Then go shopping for not only the best deal but the best machine with the most data available. Note that they can't really be locked, the manuals are available on line. Read the Wiki on top of the page and print out the information to take with you so you won't get swamped by their talk. Also some machines have almost the same name except some are bricks and other are great data capable machines.
It is a lot like buying a used car, take everything they say with a large grain of salt - actually used car sales people usually know what they are selling - these people don't so they just make it up as they go along.

[Slinky]

I can't vouch for the F&P having had no experience w/it - BUT - Resmed has long led the field in easy access to and amount of data available via the LCD screen. The Resmed S8's did provide for the doctor to script access to the LCD screen data. I'm not sure if the S9's Users Manual tells you how to do so or whether it is also subject to the doctor including access in the script. Its no big deal since there are plenty of us here who can tell you how to access your data via the LCD screen. BUT - it is the message you want to get across to an either "uninformed" RRT who doesn't know the equipment they are providing as well as he/she should - or - he/she is "less than truthful". I wouldn't bother to mention the ResScan software as that could just make the provider more determined to try to prevent your access to any data.

Ask your sleep doctor to include "access to Leak, AHI and AI data" on your script. And whilst you are at it you might just as well ask that he/she also include "full face, nasal cushion, nasal pillows or oro-nasal mask of patient's choice" as each of these 4 styles are a different HCPCS (insurance) code and a really difficult local DME provider can severely limit your choices. If your sleep doctor won't do so, ask your family doctor to re-write the script to include those two phrases.

[SleepyHound]

Thanks everyone, for your input! Though the guy on the phone was very nice and informative thru 95% of the conversation. But yea, I was a bit shocked when he said that no info is accessible by the patient. I didn't push it since I knew I had my resources online. I was also a little confused, thinking, "then what the heck have I been reading about all week regarding software, websites, etc, if all data is locked and not accessible??"

I have read Janknitz's blog about DME and CPAP, so I have a better understanding of the salesmanship techniques of the DME. I've never met the sleep doctor that has analyzed my sleep studies, so I will likely go thru my primary care doc to get any scripts that I may need to get more specific orders if needed. I looked into getting my study results from the sleep center but it costs $20 for "processing" and then 25 cents per page. So again, I'll just ask my primary care doc to make me a copy of the reports that were put into my chart.

[archangle]

First, find out if there are local DMEs other than the one you're dealing with. Your insurance will probably have a list of in network providers. Don't get too happy if you find them. Many DMEs are jerks. However, when they know you know you can go elsewhere, they tend to get a lot more customer friendly.

Second get your prescription in hand. On paper, signed by the doctor. Don't tell the doctor why, just get the prescription. Tell them you want a copy in case you have to buy a unit or supplies while traveling. It's your right as a patient, according to HIPPA. If nothing else, it's useful to be able to order mask parts and supplies online. It also helps if you want to shop around and find another DME.

Third, do not accept delivery of a CPAP machine if it's not the one you want. It's a lot harder to get the machine you want once you've accepted delivery of the wrong one. Change DMEs if necessary.

Don't worry too much about what the DME thinks. Get the right machine and then get the software and read the data no matter what they think. You may need to wait until after the compliance period to start tinkering with your pressures.

I'll go farther than robysue, get an Auto machine. S9 Autoset, PR System one Auto, or F&P Auto. You don't have to set it to auto, but auto is a useful function.

[Breathe Jimbo]

Don't take No for an answer!

Insist on at least an S9 ELITE; do not accept an S9 Escape.

Tell the DME that you will go elsewhere for a fully data-capable machine, if necessary.

Get your Rx in hand. Ask your doctor to write "fully data-capable" on the Rx.

Insist on full data capability so that you can monitor the effectiveness of your treatment, the same way a diabetic monitors his blood glucose and someone with high BP monitors his BP. The is an irrefutable argument, so stick to it and don't let anyone push you around.

[DoriC]

You don't want a machine that has Escape in the name(Resmed) or Plus (Respironics). These only give compliance data for insurance purposes. You want at least an S9 Elite or PR System One Pro which provides data, if you can get either of the auto versions, all the better as you can set them to a straight pressure or a range of pressures, like having 2 machines in one. Good luck and keep us posted.

[AMUW]

SleepyHound,

There are all several degrees of DATA and availability to read it, whether by the sleep tech, sleep doctor, DME, GP, or patient:

1. sleep study results: can be reduced to a half-dozen numbers, to a 2 page report, to a 6 page report, or to full access to the raw data (if one has compatible software); and a second PSG night, or interpretation by a different technician, may lead to different results.

2. home CPAP (I use a ResMed S9 Autoset): just a few numbers appearing on the display screen for the night, or what has been stored on the software card for a recent period (if one has the ability to download and interpret it), or a cumulative database of all results (from periodic downloads); the DME may or may not be willing and able (training /registration) and take the time to process and provide you with the information, only access the compliance data needed for insurance; the sleep doctor may not have the time or the confidence in home CPAP data, may consider it only important for compliance.

3. you've most probably read on this forum posts from patients very interested in their detailed data interpretation, myself included ... even trying to read more into its significance than possible; then of other patients who don't have the time and patience and computer savvy to go through the process, who rely on getting the interpretation from the medical people involved (while insurance may not be willing to pay for the support time); finally of patients who just WANT IT TO WORK LIKE MAGIC FOR THEM ... period, who can get quite emotional when it doesn't.

This is my impression, from my first 8 months of immersion into this medical disorder with wide variability in symptoms and treatment. Similar to other disorders with unclear situations (like maybe Parkinson's Disease). To address this problem, the medical field has agreed in some standard protocols, and the insurance industry is covering a considerable part of it.

But I get the impression that the doctor considers the insurance agent more of a customer than the patient. Which may still fix your OSA, if it is a simple case. But if yours is more complex, and you want to address the situation seriously, then you need to take an active role in the process, play the integrator among the specialists and between the snapshots of information the doctor gets of your therapy on individual visits.

[midwestosa]

I'm starting to learn that in the cpap community there is a perception that dme's are the equivalent of used car dealers, be very skeptical of them and take everything they tell you with a big grain of salt.

[chunkyfrog]

I found my S9 Elite was just fine until I started a weight loss program.
My S9 Autoset has been invaluable since weight loss has affected my mask fit as well as my pressure requirements.
As a matter of fact, had the DME been able to saddle me with a crummy Elite, it probably would have sabotaged my efforts to attain a healthy weight.
Thanks to the people on this site, I am healthier than I have been for over 20 years.

[cflame1]

You don't want a machine that has Escape in the name(Resmed) or Plus (Respironics). These only give compliance data for insurance purposes. You want at least an S9 Elite or PR System One Pro which provides data, if you can get either of the auto versions, all the better as you can set them to a straight pressure or a range of pressures, like having 2 machines in one. Good luck and keep us posted.

and DON'T accept an Escape Auto!

[Slinky]

It is ILLEGAL for them to charge a $20 "processing" fee. HIPAA (federal law) allows only for a "reasonable" fee. And I believe but don't remember for absolute sure that they can only charge a "reasonable" fee PER PAGE. I'll have to get you the link to that. Or you can find it yourself at apneasupport.com under a sticky titled "accessing your medical records" or something similar.