Orwell Redux: Your Medical Privacy is no longer private


From The Health Sciences Institute

If you're a U.S. citizen, as of today (4.14.03) you now have a medical identification number.
Some will tell you that your new ID number helps protect your privacy. And while to some extent it does, the protections are largely superficial. The disturbing truth is that your medical privacy is now beyond your control.

Just sign here...

The next time you visit your doctor, you may notice some changes.

For instance, you might see privacy screens placed around the edges of computer monitors to prevent someone from glancing at your personal medical information. And once you've received your new medical ID number, the receptionist may call you in from the waiting room by your number instead of your name - a procedure designed to protect your privacy from others in the waiting room. (Speaking for myself, this completely impersonal and unnecessary procedure is not a protection that I've been longing for.)

More importantly, you'll be asked to read a description of the new federal regulation that, in theory, is designed to protect the privacy of your medical records in this new age of electronic record-keeping and file transfer. And you'll be asked to sign a document, stating that you've read about the new regulation, understand it, and agree to the new procedures.

Ready for the kicker? If you don't sign the form, your doctor is allowed to refuse to treat you and your insurance company is allowed to refuse coverage.

If you're wondering why this new "privacy" that's granted to you is, in effect, being forced down your throat, the answer lies in the fact that these regulations actually weaken your ability to restrict access to your medical history.

Regs running roughshod

The source of the revised federal medical privacy rule is the Health Insurance Portability and Accountability Act (HIPAA), passed by Congress in 1996. And I'll offer this benefit of the doubt: the original idea that led to this act may very well have had a good intention to protect the privacy of our medical records. But something went awry as this good idea passed through the massive Congressional and regulatory maze. If you roll a snowball down a long muddy hill, you end up with a muddy snowball.

As the rule now stands, doctors, dentists, pharmacists, hospital personnel, and even psychotherapists have to abide by new requirements that can be as simple as providing a secure area for private consultations, or as high tech as encryption software for computer programs. The government estimates that healthcare providers will spend as much as $4 billion to comply with these measures. And do you imagine those costs will be passed along to the patients? You can be absolutely sure of that.

So what will we get in return for all of this bureaucratic effort and exorbitant expense? Here are a few of the realities of the new "privacy" rule:

  • Doctors and insurance companies may now share a patient's health information with third parties (including the U.S. Department of Health and Human Services (HHS)) without asking the patient for permission.
  • A patient cannot withhold medical information from HHS.
  • Doctors and insurance companies are not required to give patients an accounting of third parties with whom their information is shared. A patient's request for such an accounting can be denied.
  • Doctors and insurance companies can share a patient's medical records with the FDA as well as foreign governments who may be collaborating with U.S. health officials.
  • If the privacy of a patient's medical records has been violated, the patient can issue a complaint to HHS, but the department is not required to investigate the complaint. Furthermore, the patient cannot bring a lawsuit against a doctor or an insurance company for a breach of privacy.

To say that these regulations shamefully contradict the ethic of doctor/patient confidentiality is to put it mildly. That age-old standard is now out the window. But I saved the best one for last: HHS may now access a patient's phychotherapy notes. That's right: the most sacrosanct area of all - the health of your psyche - is now open to government examination. They don't have to ask for your permission, and they don't have to tell you if they're sharing your most private thoughts with third parties.

Welcome to "1984" - just 19 years late.

Speak now

What can you do about all this? Frankly, not much. The Standards for Privacy of Individually Identifiable Health Information rule officially went into effect on April 14, 2001. The "enforcement" of that rule goes into effect today.

Normally I don't report to you about situations in which you have no course of action. But even though this new rule is signed, sealed, and (as of today) delivered, there is one way you can make your voice heard.

The Citizens' Council on Health Care (CCHC - a non-profit organization that promotes the right of each individual to control his health care decisions) has prepared a form titled "Declaration of Medical Privacy Intent." You can print out this form from their web site, fill in the appropriate information, and then instruct your doctor, psychologist, pharmacist, and insurance companies to include the form with your permanent records. Or, if you don't feel comfortable using the CCHC form, you can write a letter declaring that you do not wish to have your private medical information shared with any third parties without your written consent.

What authority this letter or the CCHC form might carry is questionable. It's certainly possible that someone might see it and respect your wishes. And I imagine that at some point push will come to shove and the legality of this new rule will be tested in court. In that case, a written declaration insisting that your medical records remain private could carry weight in a legal proceeding. I should know better, but I find it hard to believe that any judge sworn to uphold the U.S. Constitution would deny a patient his right to doctor/patient confidentiality.

But then, I find it hard to believe that this new rule is being allowed to trample our basic right to privacy in the first place. Laura Sherrill, a hospital administrator in charge of medical records, told the Honolulu Star Bulletin last week, "From now on, it's going to be a new world." I hope she's wrong, but I'm afraid she's right.

Republished with the permission of the Health Sciences Institute'
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In accordance with Title 17 U.S.C. Section 107, any copyrighted work in this message is distributed under fair use without profit or payment for non-profit research and educational purposes only. [Ref. http://www.law.cornell.edu/uscode/17/107.shtml]

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