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The Problem
The HIPAA Privacy Rule must die. Since its inception in 2003, the HIPAA Privacy Rule has been invoked by health care providers not to protect us patients as Congress originally intended, but rather as a crutch for health care providers to fall back on when they have an interest, be it laziness, financial, incompetence or whatever, in making it more difficult for patients to gain control over our own health care decisions.

A Personal Anecdote
The absolute absurdity of this law was brought home to me recently when visiting a friend in the hospital who had suffered from a debilitating stroke. My friend Laura was uninsured at the time of the stroke and wanted my help when the public hospital she was at abruptly decided to discharge her without any notice or treatment plan. The hospital administrator in charge of Laura's case refused to speak to me, citing HIPAA. This despite the fact that my friend Laura was literally seated in her wheelchair beside me as I broached the topic of Laura's health. Fortunately, I am an Ivy-League educated attorney who happens to know a thing or two about HIPAA. "Laura," I then asked, "do you make me your agent to discuss every aspect of your health, without limitation, with any and all agents or representatives of this hospital?" She responded that she did. The hospital administrator was then trapped, and reluctantly began to talk to me.

The Legislation Itself
But should we really need a lawyer beside us to access our own health records? The drafters of HIPAA certainly didn't think so. Which is why if you check the applicable law, 45 CFR 164.502, one of the very first things is makes crystal clear is that although this is a privacy law, it is of course not to be used against the very individual whose privacy it is meant to protect:

Sec. 164.502 Uses and disclosures of protected health information: general rules.

(a) Standard. A covered entity may not use or disclose protected
health information, except as permitted or required by this subpart or
by subpart C of part 160 of this subchapter.
(1) Permitted uses and disclosures. A covered entity is permitted to
use or disclose protected health information as follows:
(i) To the individual;

Purpose of the HIPAA Privacy Rule
The HIPAA Privacy Rule is there to protect us patients from others who would do evil, nefarious things with our health care information. As the U.S. Department of Health and Human Services states on its website: "without the Privacy Rule patient information held by a health plan could, without the patient’s permission, be passed on to a lender who could then deny the patient's application for a home mortgage or a credit card, or to an employer who could use it in personnel decisions."

Ask yourself this: what are you more worried about: being denied for a mortgage on account of health information leaking out somehow to the bank underwriting your mortgage, or spending hours and days on the phone with your doctors' receptionists and administrators trying to figure out what is going on with your health so that you can make an informed decision about the next step? I know where I stand on the answer to that question. And that's why I repeat: the HIPAA Privacy Rule must die.

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Comment by Judy on March 17, 2009 at 9:09am
Rock Hinkle, I am one who "hits" the medical profession AND the sleep profession pretty hard at times. But I don't think I've ever criticized an RPSGT - yet - (give me time *wicked grin*). So far the RPSGTs have been the heroes in the sleep profession.

There ARE GOOD sleep doctors and local DME RTs out there. The problem is there are so many that aren't - and we patients end up in these apnea support forums looking for and receiving the support and education and advice we SHOULD have gotten from our sleep professionals.

I had and liked the 6 RPSGTs I've had thru the years but none allowed me to see my study in the morning!! I never got the same one twice either. *sigh* I sure wouldn't mind having a titration w/you as my RPSGT!!!
Comment by The SleepGuide Crew on March 16, 2009 at 11:35pm
i certainly don't want to stereotype all sleep care workers, or medical professionals as falling into one category or another. i appreciate that there are exceptional care providers like you and your colleagues out there. thanks for doing what you do.
Comment by RockRpsgt on March 16, 2009 at 11:05pm
First of all I am a sleep care professional without a drug or drinking problem. I also think that in the year I have been doing sleep studies I have seen my Dr. less than 5 times, and highly doubt that he would no me in the street. So short of the techs that I work with I highly doubt that their is a conspiracy in my office. I also allow my pts to see the study in the morning. I explain hypopneas, and apneas, then I show them. I document well, and by the book. As far as I know, after the Dr. has completed a diagnosis or perscription, a pt is alloud full disclosure of all sleep documents. I am sorry for anyone that has had problems. You should not stereotype all of us sleep care workers into this negative catagorie. I am a sleep care worker because I want to help. I do agree that you should not have had to recite the law with your friend at your side. In this case it was the interpreter of the law at fault, not the actual law. HIPPA is for our protection. I would not want anyone to be able to pass my medical history around with my social security number. I have enough trouble getting a loan without anyone seeing what a klutz I am.
Comment by Mike on March 15, 2009 at 11:01pm
I hate HIPAA. How long can this HIPPA privacy rule last in an age in which patients go online to share personal information about their illnesses/disorders with complete strangers online in forums like these? What purpose does it serve now other than to be used by ignorant/misinformed/unscrupulous medical providers against the very patients it was meant to serve?
Comment by Anne Pf on March 15, 2009 at 10:18pm
I've been a registered nurse for almost 30 years. HIPPA fixed a problem that didn't exist. It was bundled in with a provision to make health insurance "portable" (which we would all probably agree with) and created new rules for ensuring patient privacy that were, in my opinion, unneccessary. It required, for instance, that each medical entity produce a document outlining their "privacy practices", A huge waste of paper that changed nothing.
Many medical providers do not understand HIPPA and will refuse to give medical information to other medical providers. I've called doctors regarding patients in our medical practice -- patients that we actually REFERRED to this doctor -- and had the doctor's office refuse information.
HIPPA stimies communication between medical providers. The whole "need to know thing" is nonsense -- doctors need all the information there is to make appropriate diagnosis and treatment decisions. Who is to say what information is not important?
I even knew of a case where a man was dying and they would not call his ex-wife. Since they were divorced, she had no standing, but they were still very much a couple and many people in the hospital knew it. But they were afraid to call her because of HIPPA, and he died alone.
I hate HIPPA, and I am not alone in this among the medical community. We have always respected the patient's privacy and never would have shared things without a good reason -- and I never heard of a glaring example of a violation of privacy that inspired the HIPPA regulations.
Comment by sleepycarol on March 15, 2009 at 8:43pm
My mom had some significant mental issues that us kids had to deal with after my dad passed away. My mom outlived my dad by nearly 20 years. Mom had bipolar among other issues. Our family doctor treated us from the time he arrived in town prior to our births until his retirement in 1986. Prior to his retirement when Mom would have a "spell" all we had to do was call him and he was very supportive and we were able to get mom the care she needed -- typically hospitalization until she was leveled back out. When our doctor retired my mother and siblings all chose different doctors. My mom chose a doctor that was an internist. Since I was the oldest of the kids I often had to deal with mom and her medical care. Mom was also addicted to prescription drugs. Mom soon had multiple doctors and multiple scripts. Her primary doctor didn't want to hear it. He chose to turn a "deaf" ear. Thank goodness my mother's mental health doctor (located 100 miles away) would listen to us when she needed intervention. This was very very very frustrating (especially when she would threaten us with violence).

When I had a mental breakdown a few years ago HIPPA was cited why the doctors would not talk to my kids about my care. -- Been there done that and in my opinion under certain conditions family members should be allowed to receive information as well as provide information.
Comment by Judy on March 15, 2009 at 6:09pm
Sorry, correction, TWO refusals.
Comment by Judy on March 15, 2009 at 6:08pm
I'm saying that I've fought for copies of my medical records for years before HIPAA. And since HIPAA I've had only one refusal - an insistence first that what I wanted wasn't part of the information they generally provide and then that they couldn't produce the information I wanted. Since what I was asking for originally was the full scored data summary report w/condensed graphs from a titration study and they insisted their software wasn't capable of producing that report I then requested a CD/DVD of the full study which they said the doctor would only provide to another accredited doctor of my choosing. I'm sure they were banking on that accredited sleep doctor not being willing to provide it to me, ESPECIALLY, if they ask that he not do so. Like I'm supposed to be on such "intimate" terms w/some local sleep doctor he would give me that CD/DVD if they asked him not to. They stick together like fleas. And a good share of their medical malpractice problems is because they covered for each others' gross mistakes, incompetence, drinking and drug problems for years w/o regard for patient safety. Now the pendulum has swung to the other extreme.

Look, I come from the generation when heaven forbid! the patient should know or see what their BP, temp and PR were! When if a patient had the audacity to look thru their hospital chart on the wall the nurses near had a heart attack like the patient had committed a criminal offense and the chart spent the rest of the hospital "protected" at the nurses' desk. And we were expected to "trust" our doctors and the medical profession?? Ha!! All that did was instill a great distrust of the medical profession in general w/each member I encounter HAVING to EARN my respect.
Comment by The SleepGuide Crew on March 15, 2009 at 5:09pm
actually, because the health care providers are permitted to give the patient access to his/her own information, but not required to do so, they will be very unlikely to ever find a so-called violation of the Privacy Rule. A ridiculous loophole for health care providers who want to hide stuff from us to cover their butt with.
Comment by The SleepGuide Crew on March 15, 2009 at 5:07pm
Judy, are you saying that instead of asking for your medical records and getting them, that you're ok going through this process once you're denied access (doesn't sound like my idea of a good time):

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