I went to my first AWAKE meeting tonight.  There was some discussion about patients being able to access their own data.  The PA present seemed surprised that patients were 'allowed' the software to access their own data.  The DMEs present (including mine) said that they would need to get physician approval before dispensing the software and card readers necessary.  The Respironics Rep (I wasn't able to confirm that he was, indeed, an official Respironics rep) indicated that with approval, they would supply the software and card reader at no charge, "To select patients with physician concurrance."  

While I was talking with my DME and the PA, they had the nerve to tell me that they didn't encourage patient access to the data, "Because it's very complicated and you wouldn't understand how to interpret it."  Wrong thing to say to me.  My machine, my data, obtained in my house.  Following their logic, diabetics probably shouldn't be allowed access to their blood sugar data because it's 'complicated.'  We agreed to disagree this evening, and we (PA, Dr., DME and me) have a conference call scheduled for tomorrow to discuss further.


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Philomath, a two stop-light town in western Oregon
*
Butter is my favorite vegetable.
*
Respironics BiPAP Auto M with heated humidifier
Resmed Quattro

Good for you, Philomath!  I hope the conference call goes amicably and the point that patient access of data is useful, is brought home.  I would be interested in knowing more from that alleged 'rep' who would make both a card reader and software available for free.  Many of us paid good money for those items and it would be nice to have them provided instead.  I'm sure the claim was just smoke but it doesn't hurt to pursue it

Keep us posted!  Blessings,
--pseudonym

I echo: "Good for you, Philomath!". I'd have been LIVID and really seen RED had I been there. I'm sure you handled the situation MUCH MORE diplomatically than I would have!

Be sure to point out that AT THE VERY LEAST it gives the patient something to look forward to every morning thus encouraging them to USE that CPAP and mask! It gives the patient some immediate input into how their therapy is going. It also gives them a sense of control rather than their therapy being kept as some deep dark mystery from them. Point out just how INSULTING this attitude that the patient "wouldn't understand" the results is. It is INSULTING that they would assume we wouldn't have enough intelligence to ask questions about what we don't understand. Such an INSULTING attitude just instills a LACK OF TRUST and a SUSPICION of them that they just don't want to be BOTHERED having to answer questions. OR that they don't even know the answer themselves!!

Good luck, Philomath!!! And thank you for TRYING to instill some COMMON SENSE into these "professionals". And I use the term "professionals" VERY LOOSELY!


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Another plus for patients to have access to their nightly data- It can calm us down.  We get worried when we are tired and start thinking we are having apneas. If we can check the data, we can see when we are not. If we ARE we can act accordingly.  These "professionals" in the field just do not get it.
Grandma


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ResMed Quattro Full Face Mask
ResMed S8 Escape with heated humidifier
Pressure set at 11

For most of these "Professionals" it is plain and simple,  job protection or so they might think!! It strokes their outlandish Ego's and makes  them feel superior! They know something you don't!  And they all want to keep it that way!! They like sitting up on their imaginary pedestals looking down on their subjects! It is all B.S! and Hogwash! We pay for their products and services, we are entitled to know how to use and operated it and get the most from it! They are no better than the rest of us! This is a Problem with the whole medical profession!
  Philomath I read your post this morning but didn't  have time to respond, I hope you give them an Ear full on that conference call. This really hits a nerve with me. I have seen too darn much of this!

Actually, "educated idiots" is a term I've often been inspired to use in reference to some in the medical profession.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

The conference call was fairly amiable.  The hangup right now is the physician.  She seemed surprised that anybody would WANT to access their data.  She said, "The DME prints the data from your card every quarter and mails us a copy, but if you seem do be doing OK we don't even look at it."  Precisely my point.  She is going to touch base with some associates to see if they have a policy.  We have another call scheduled for tomorrow. . . .


_________________
Philomath, a two stop-light town in western Oregon
*
Butter is my favorite vegetable.
*
Respironics BiPAP Auto M with heated humidifier
Resmed Quattro

Duh! What a dipchit that sleep doctor is! Thank you for your attempts to wise her up and bring her into the 21st Century, Philo.

And for her to even admit that if the patient SEEMS TO BE DOING OKAY "they" don't even look at the data printouts ..... gads!!! What a STUPID admission. This babe must be a real "educated idiot"!

Good luck tomorrow! And thank you again so much for TRYING to educate those in the sleep profession. You must be one h*ll of a diplomat!!!


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Crohnie Too, my husband used to say of the physicians in general "someone had to graduate at the bottom of the class"...ergo "not THAT WELL educated.

I just have trouble conceiving of a doctor being so candid as to admit that they don't make a practice of paying any attention to the data printouts if the patient SEEMS to be doing good!!! The problem is I am SURE that in many, if not most cases, that is entirely true! We often read in these forums of sleep doctors who will go so far as to say the data isn't accurate or of any value or aren't even aware there are xPAPs that PROVIDE data!!!

To give this doctor the benefit of the doubt MAYBE she was being candid, that would really be REFRESHING if she was! I can respect a doctor who tells me "I don't know", I DETEST a doctor who tries to hand me a "snow job"! Or one (and I've run into a couple like that) who will lie thru their teeth to get you to do what THEY want you to do rather than to present true information, their advice and then RESPECT the patient's decision.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

This believe, it or not, is typical of allot of doctors,  I have  seen to much of it! I think it is just blatant ignorant arrogance!  I better shut-up this subject raises my BP to high!

Well, as you just might well have noticed, WhiteBeard, I tend to take offense real easily to the medical profession's "turn of words" myself. I don't have a problem w/high BP - but - I do take the offensive w/a hair trigger temper when it comes to the medical profession. I really appreciate my good doctors I've found but have little tolerance, confidence or trust w/the others. And its been well deserved on their part.

Years ago, when I was still having kids, heaven forbid the patient should see what their BP, temp or pulse was!!! The nurses would about have a heart attack if they caught you peeking over their shoulder as they wrote it down. And, good Lord! if the patient got "caught" reading their own hospital chart!!!!! More than one hospital stay my chart sat down at the nurses' desk full time instead of outside my room like everyone elses. THAT helped to start my war w/the medieval mindset so firmly established in the medical profession. I trust NONE of them completely. Despite what so many of them think, they do NOT walk on water, they slip and fall flat on their faces just like the rest of us.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

When I worked on an Oncology unit and a Med-Surgical unit,  I can't tell you the number of times I was in conflict with my co-workers! For one thing I was a male in a mostly female dominated career (nursing), an I was also older, I went into nursing after I retired from the military. So I had a slightly different view (a massively different view) of how things should be, and how patients should be treated! For one thing the patient is the boss we all work for them. I also believe the patient has the right to know everything they want to know, and even some things they might not want to know about their condition and treatment! They also have the right to choose their treatment or refuse it! With no prejudice held against them for their choice! So I throughly understand your distrust of the personnel in the medical profession, I to share in that distrust, and I know it better than most! It scares me to death to have to go to the hospital, I know to much! and I also know the attitude of allot of  people in the  nursing field, It is scary! Not to say there are not many good people in the profession, there are, but to often they are far and few between. CrohnieToo  You are wise not to completely trust them, they are just as human as the rest of us, and also no better, but some if not most like to think they are.

Ahhh, but when you find a "good 'un" you gotta treasure them. Let them know you appreciate them. AND, hopefully, they employ good "desk dragons". Once in a great while you run across an exceptionally good doctor - but getting past the "desk dragons" to speak to or see him ..... THAT can be a challenge! I ran into that w/my gastro and was about to desert her despite how much I liked her. Fortunately, she took in another gastro to her practice and together they hired new and more staff and they have GREAT desk dragons on staff now. I doubt she knows how close I came to switching ... unless my family doctor ratted me out when I asked him who he usually referred to and said why I wanted a referral to another gastro. He KNOWS how much I like this gastro so he KNEW I had HAD it w/her desk dragons. But somehow something has been lost in the relationship and its not quite the same any more .... *sigh*


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Update:  

The Dr. thought about it overnight.  She decided she has no problem with me accessing my data (duh!).  She also said I was the first person to make an issue of wanting the software.  She said that most people interested in the data have the DME download it occasionally.  She said that might be a better option.  It might be, but the DME is located in a larger town about 30 miles from here.  She called the DME and told them to give me whatever I wanted.  

More as it unflolds.


_________________
Philomath, a two stop-light town in western Oregon
*
Butter is my favorite vegetable.
*
Respironics BiPAP Auto M with heated humidifier
Resmed Quattro