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On Being a Patient |

Paranoia over Privacy

Richard L. Neubauer, MD
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From Anchorage, AK 99508.

Requests for Single Reprints: Richard L. Neubauer, MD, 3500 La-Touche, Suite 310, Anchorage, AK, 99508; e-mail, stuckagain@alaska.com.

Ann Intern Med. 2006;145(3):228-229. doi:10.7326/0003-4819-145-3-200608010-00012
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In the fall of 2002, I entered unfamiliar territory. Diagnosed with peripheral neuropathy from primary amyloidosis at age 52, I became a patient. I put my affairs in order, obtained coverage for my busy practice in Anchorage, Alaska, and headed to New York City for an autologous stem-cell transplantation. I was aware that I could not expect a cure, but was hopeful that there was a chance for remission.





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Too timid a response
Posted on August 7, 2006
Ben Z Katz
Northwestern University
Conflict of Interest: None Declared

In their response to Dr. Neubauer's Paranoia over Privacy, Drs. Cruess twice repeat the mantra that "physicians must obey the law". Unfortunately, this is how we have arrived in our sorry state of overregulation by beaurocracies and underpayment by insurance companies who skim 15% of health care dollars for themselves. It is not a radical position to oppose laws which are meaningless, unjust, or immoral. About half of all drivers speed, often traveling on highways built for speeds which are now deemed "above the limit". For years before it was "the rule" at my institution, I obtained hepatitis C studies on healthcare workers with needlestick exposures, and about 25% of Travel Clinics offered hepatitis A vaccines to babies older than 1 year of age at least 8 years before the FDA said it was OK to do so. Colleges required a meningitis vaccine way before medical bodies implemented such a recommendation. If we wait for professional societies we will be waiting a long time (or for Godot). And I needn't of course remind anyone about those few who defied the Nuremberg "Laws". I think a bit of disobedience may be exactly what is called for.

Conflict of Interest:

None declared

HIPAA Myths Foster Institutional Paranoia
Posted on August 10, 2006
William L. Allen
University of Florida College of Medicine
Conflict of Interest: None Declared

Dr. Neubauer's willingness to share his experiences as a patient are laudable and welcome. Although his frustration about HIPAA is widely shared, much of it is based on gross misunderstanding of what HIPAA actually requires. Whatever legitimate concerns there may be about HIPAA, the most salient examples Dr. Neubauer relates are not remotely required by HIPAA, though they may be instances of institutional HIPAA paranoia.

Nothing in HIPAA prevents "face-to-face patient presentations" to students or residents in lectures or rounds. Patients may share their stories face to face in teaching settings, or not.

Nothing in HIPAA prohibited his wife from snapping his picture in the hospital lobby as he left, even if other patients were in the photo. HIPAA applies to medical information generated by the provider, not to a photo taken by his wife in a public space.

When an insurance benefit administrator covered Dr. Neubauer's autologous stem-cell transplant, but refused coverage for one of his patients, the administrator's claim that HIPAA prohibited discussion of his case in relation to hers, even with his consent, is just wrong. That was likely the administrator's excuse for not wanting to address the discrepancy. But protected health information can be disclosed to anyone with patient permission.

As for concern about HIPAA's "potent financial penalties," of the 19,420 grievances lodged in the three years of HIPAA, HHS has referred only 309 to the Justice Department for criminal violations, the kind for which the penalties are most substantial. There have been only two convictions thus far.

For the civil complaints that have not been dismissed as invalid, the approach has been "˜voluntary compliance,' meaning no penalty if the entity agrees to fix the problem. This led Larry S. Fields, M.D., president of the American Academy of Family Physicians to say, "We're more used to the government coming down with a heavy hand where it's unnecessary. I applaud HHS for taking this route." (Stein, 2006)

Commentary accompanying Dr. Neubauer's article wisely urges physicians to address problems with healthcare legislation through their professional organizations. Such efforts will be far more effective and credible if they focus on actual HIPAA mandates rather than institutional myths about what HIPAA requires.

Stein, R.: "Medical Privacy Law Nets No Fines," Washington Post, June 5, 2006; section A, page 1

Conflict of Interest:

None declared

Posted on August 17, 2006
Moshe Schmidt
VA-NYHHCS, Brooklyn Campus
Conflict of Interest: None Declared

Dr. Neubauer's position is most paraiseworthy and my only regert was, that I had once hoped to claim originality for the term PP=Privacy Paranoia.

Other approaches to privacy than the HIPPA legislation, which should not have been implemented by the medical profession for the benefit of society at large,exist.

A glaring and preceeding example was the policy regarding the mangement of AIDS.There,I believe privacy came at the heavy cost of the dramatic spread of the HIV pandemic.

Conflict of Interest:

None declared

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