Is it true about Resmed and software?

I was wondering that if pressed, could you actually sue under HIPPA to be able to get a product to retrieve your own data which by law belongs to the patient?

taberge wrote:I was wondering that if pressed, could you actually sue under HIPPA to be able to get a product to retrieve your own data which by law belongs to the patient?

Yup, sure can. And it'd be really bad PR for the doc.

I would think not. Not as long as the doctor can do a download and printout and provide that data copies. Or the DME provider can do the download and printout and provide the data copies. You have a right to COPIES of your medical records, not a right to equipment to access those records.

LinkC wrote: Then it appears we are all agreed, now that the incompetent and disinterested have been pared from the list. Group hug!

Nope, not in agreement. They can have access also. Who is so wise as to decide who is incompetent and disinterested?

After all, we let these people drive on the highway.

Slinky wrote: and provide the data copies.

i agree with your assessment regarding data vice equipment.

But "provide" is a tricky word. You have the right to SEE your records (and there are some circumstances where even that's not absolute). Copies may be at your expense, and may take up to 30 days.

Regardless, NOTHING in HIPAA requires that any method of provision for access to your medical records be granted to you. Only that you do have a legal right to copies of those medical records - usually the only exception being where access to those records might be a detriment to your safety or the safety of others. And, I've forgotten what HIPAA has to say about mental health records, but usually mental heatlh records are held to a different standard than physical health records.

I provide this URL first as it provides access to individual states laws

http://hpi.georgetown.edu/privacy/records.html

This site provides some information on the limitations to access to copies of your medical records at one university

http://www.cumc.columbia.edu/hipaa/policies/rights.html

Some of which are

The patient may only access, inspect, and/or obtain a copy of his/her PHI in a "designated record set." The designated record set does not include, and the patient may not access:

Psychotherapy notes about the patient;

Personal notes and observations about the patient created by a health care provider (provided such notes and observations are not included in the patient's medical record);

PHI that is compiled in reasonable anticipation of, or for use in, a civil, criminal, or administrative action or proceeding; and

PHI that is subject to the Clinical Laboratory Improvements Amendments of 1988 (CLIA).

The patient's provider can provide a summary of the patient's PHI in lieu of granting access to all the patient's PHI if, in the professional judgment of the patient's provider, providing the patient with unlimited access to his/her PHI would endanger the life or physical safety of the patient or another person.

This URL is access to a privacy rights orgnization

http://www.privacyrights.org/fs/fs8-med.htm#E

and lastly the government website

http://www.hhs.gov/ocr/privacy/index.html

WHAT ABOUT YOUR DME PROVIDER? I DO A DOWNLOAD FOR ALL 400+ PATIENTS EVERY 3 MONTHS AND MAKE RECOMMENDATIONS TO THE DOCTORS.

LinkC wrote

You have the right to SEE your records

One of my hobbies is family tree research (genealogy). Years ago, after buying my first digital camera, I started using it to take photos of family pictures, documents, letters, and other items in the possession of other family members that I visited and which, I thought, would prove useful to me in pursuing my new hobby. I have since expanded my photo taking to include other items that may prove useful to me. For example, in the medical arena, I have taken photos of medical equipment (and the settings) used in my Physical Therapy sessions, informational articles/posters/announcements/photos ... displayed on the wall and bulletin boards by my medical providers, X-rays, and photos of PC screens displaying personal medical information that is not easily printed.

I usually take a digital camera with me on medical visits but, if I forget, I always have my camera phone. I take a photo and if someone says "no photo", I ask for a printed copy and delete the photo from my camera/phone. I seldom have to delete a photo without getting a printed copy or the promise that I will be sent a printed copy.

So, at least for me, Seeing results in my getting a photo copy. After returning home, I crop the photo and save it on my PC so I will be able to find it in the future. I have already avoided a few medical gotchas by becoming an informed patient. My only regret is that I didn't become informed sooner.

BTW, when warranted, I purchase a printed copy of my medical records. I also purchase the full resolution scans of my X-rays. My most recent ones were provided on a CD and which, to my surprise, included the X-ray browsing software.

This level of interest in one's medical diagnosis and treatment may not be someone's cup of tea. However, it is now for me based on prior bad experiences when I was just a bystander.

THERAPY1 wrote:WHAT ABOUT YOUR DME PROVIDER? I DO A DOWNLOAD FOR ALL 400+ PATIENTS EVERY 3 MONTHS AND MAKE RECOMMENDATIONS TO THE DOCTORS.

That's much better than some DME's do, and you're to be commended for that.

As for me, I wanted to see my data a lot more often than once every three months. I also wanted to educate myself about my own treatment. During my first several years, using Silverlining software with a PB autopap, and then Encore Pro with a Respironics machine, I liked to do my own downloads before older "detailed" data got overwritten with more recent "detailed" data. That meant I'd better do a download before two weeks were over with the PB machine, and before a full week was over using the Respironics machine -- if I wanted to keep a continuous "detailed" record.

With the help of the message boards (mainly invaluable help from -SWS when I was getting started) I made my own treatment decisions, and my recommendations got implemented immediately. By me.

No waiting for a DME to look at my data and decide what I need.

I may be wrong, but I seriously doubt one DME in a hundred...perhaps not one in a thousand... would have had the slightest clue what setting to change in my PB autopap after looking at my first downloads. A message board person ( -SWS) spotted the problem immediately and advised me correctly about a certain setting to change.

So, I've never had to go through any waiting for someone at a bricks/mortar DME store to do a download and notify yet another someone else in a doctor's office about what the first someone else recommends after looking at my data. No waiting for the second someone else to give the first someone else an "ok" to change my settings. And no waiting for a setting change or pressure adjustment of a cm or two that takes less than a minute to make, to finally get made by the first someone else.

Don't get me wrong. The vast majority of CPAP users probably would never be interested in learning more about their sleep disordered breathing or about handling their own therapy. Most probably prefer passively doing whatever the doctor and DME say to do. For better or worse. That's their choice. Just isn't mine.

A three month wait to see what my first data showed when trying to dial in my treatment as well as possible would have been unacceptable to me.

A data download (not just a "How's it going?" phone call to the cpap user) should be done in the first week (imho) If for nothing else than to look at the leak rate. If huge air leaks are compromising therapy, three months is wayyyyyyy too long to wait before finding that out, imho. Might be even longer if the DME is interested only in checking compliance (is the person using the machine often enough that the DME will continue getting paid rental by Medicare or the insurance company?) and never even glances at the detailed nightly data.

My sleep specialist at Univ. of Nebr. Med. Center has declared I am obsessive/compulsive because I am the only patient he knows that has purchased the EncoreViewer software. I suspect I am the only patient that has been stupid enough to admit it. So now he thinks I should see a psychiatrist. Does anyone have any idea how many copies of EncoreView have been sold, so I can at least defend myself that there are xxxx numbers of other "OCD" patients out there? I think he just doesn't want to admit he doesn't know what is causing my sleep fragmentation.

While I'm posting, can anyone recommend a really good sleep specialist in Nebraska?

Well, that's strange, lizkayfast. Most of us on this forum who view our sleep data are not also OCD types. I'm rather surprised your doctor thinks that wanting to view sleep data is a likely indicator for OCD----as opposed to someone maintaining a paradigm similar to that of diabetics who monitor their health data.

Below is a list of AASM certified sleep centers in Nebraska:
http://www.sleepcenters.org/Centers.aspx?state=NE

Good luck!

lizkayfast wrote:My sleep specialist at Univ. of Nebr. Med. Center has declared I am obsessive/compulsive because I am the only patient he knows that has purchased the EncoreViewer software...

Sigh! You are not alone. I've had doctors declare similar things to me.

I always explain in simple sentences that a fourth grader can understand. I explain that it is my body and my responsibility to mange my health. It is no different than something like diabetes. It is no different than tracking the gas mileage, repair information, tire rotation schedule, or other factors with my car. It is my car. It is my responsibility to keep it maintained. And yes, there have been times when the mileage suddenly got worse. I've had my mechanic (of more than twenty years) note that tracking such information saved us hundreds (if not thousands) of dollars. Because we usually catch big problems quickly.

How is managing sleep any different. I have a chronic problem with my sleep. I can not track my progress while asleep. But my machine can. If something changes, it is good to know it. BEFORE it becomes a major problem.

After I explain this in very simple terms, I fire that doctor and find one that is not quite as pompous.

lizkayfast wrote:My sleep specialist at Univ. of Nebr. Med. Center has declared I am obsessive/compulsive because I am the only patient he knows that has purchased the EncoreViewer software. I suspect I am the only patient that has been stupid enough to admit it. So now he thinks I should see a psychiatrist. Does anyone have any idea how many copies of EncoreView have been sold, so I can at least defend myself that there are xxxx numbers of other "OCD" patients out there? I think he just doesn't want to admit he doesn't know what is causing my sleep fragmentation.

While I'm posting, can anyone recommend a really good sleep specialist in Nebraska?

Your sleep specialist is another idiot who wants to be controlling........HE's the one who should see a psychiatrist.
If your insurance and (ultimately) your money is paying him, then he's working for YOU. Not the other way around.
For those Obsessive Controlling Doctors (another "OCD"), use the analogy of people with diabetes who need to test their blood glucose frequently and modify their insulin intake and other medications, on their own.

I'm sure there have been many thousands of copies of Encore Viewer (and before that, Encore Pro) sold to or obtained by users who insist on taking control of their own therapy.
I presume you're in Omaha. There are a number of forum members in Nebraska, and many of them have and use the Encore software......so, you're not alone in "Huskerland". (by the way, I grew up in SE Nebr. and still have lots or relatives there)

Many of the forum members were not well served by our doctors (if they even met them) and found solutions here.

Have you received a copy of your sleep study? Was your sleep fragmentation noted in it or has that been a continual problem with your therapy?

PS. I pulled up your two logged-in posts and didn't see what equipment you're using or what your pressure settings are. Could you please edit your profile and add that information?


Den

lizkay aka lizkayfast. Thanks to those who have responded.

I have had horrible daytime sleepiness (not body fatigue/muscle fatigue) since 1-03. First sleep study was done 3-05 by the director of an ASSM certified sleep lab in Lincoln, NE. AHI was .09, but had 93 RERAs, 21.2 event index. 116 arousals & awakenings = index of 25, 1.5% stage 3, 0% stage 4, 9.3% REM

Titration droped the AHI to 0, 1 RERA, 0.6 event index. 79 arousals & awakenings = index of 14. 26% stage 3, 0% stage 4, .05 % REM.

Diagnosis was OSA, primarily in the form of RERAs.

Had a second study at a smaller outstate lab in 10-05. Pressure was left at 5 all night. AHI was .04, 76 arousals = index of 13, 10% Stage 3, 35% stage 4, 10% REM. No mention of RERAs

Had a third study at a different outstate lab in 11-06. AHI 12.8, 77 arousals = index of 20. No mention of RERAs. 22% slow wave sleep. 5.7% REM.

While I know CPAP helps eliminate all of the snorting type breathing episodes that would continually wake me up, the horrible sleepiness continued. I am 100% compliant in CPAP use.

Decided to go to major university medical center (300 miles one way). After numerous visits, variety of medications, another sleep study was done (my MD is director of that center) there 11-08. AHI 1.6, 45 arousals = index of 8.2. No mention of RERAs. 0% stage 3 & stage 4. 0% REM. Diagnosis = "no evidence of significant sleep disordered breathing, PLM, or increased upper airway resistance. Did have severly fragmented sleep as she has been on CPAP for a number of years and likely has developed somewhat of a dependence on using the CPAP despite the fact that she does not have any overt evidence of flow limitation based on the study on this night." I did not meet criteria for titration study and would not have been prescribed CPAP based on this study.

I have taken all the sleep medications and all the wake promoting medications. The sleepiness continues. Fibro and CFS have been ruled out.