June 22, 2001
E. Ratcliff E. Anderson, Jr., M.D.
Dear Dr. Anderson:
I have received your letter of June 14th.
It begins by implying that our organization (which is, by the way, the Association of American Physicians and Surgeons) has not commented responsibly on patient privacy regulations. We have commented at every opportunity, and our comments are posted at our website, along with our testimony on various bills introduced into Congress.
You will note our concerns about the regulations' assault on patient privacy in the guise of protecting it. We are very dismayed that the AMA has not spoken out vigorously for protecting patients' privacy against intrusions by the Federal Government and its private partners. Why has the AMA not warned of the inherent dangers of placing sensitive medical data in electronic format in a manner that can be easily retrieved without patients' consent, either with or without authorization by government? And where is the AMA on the issue of a Unique Health Identifier?
In your second paragraph, you ask whether AAPS disagrees with the proposition that physicians are the guardians of a patient's medical records. If you read our comments, you will see that we do strongly emphasize this principle, and it is indeed the reason for our opposition to these regulations.
Our sources tell us that almost the entire medical industry was opposed to the implementation of the regulations in their current form. We were informed that only the AMA was in favor of going ahead with the implementation, perhaps with a proviso that changes would be made later. This information is consistent with the conclusion in your March 30, 2001, letter, urging a "limited extension of the effective date." It seems to us highly imprudent to implement regulations without knowing what the final form is going to be, in blind trust that the promised modifications will be acceptable.
We actually do agree with many of the points that you made in your letter of March 30th. That is why we are so astonished that the AMA has not taken a very strong position against implementation of this rule and in favor of its repeal.
Specifically, we agree that the government has the consent requirement backwards in its emphasis on physicians. It is also backwards, and in our view absurd, to require consent for use. Why would anyone consent to disclosure if he objected to use? It is the use requirement that will cause the worst implementation problems. Physicians are presumably getting permission for disclosure already, and they need it only when records are requested. They need permission for use day in and day out. To hold physicians responsible for checking whether permission has been revoked each and every time they access a record (or even their memory), under pain of fines and imprisonment, has to lead to utter paralysis. I wouldn't have believed it possible, but prominent attorneys are telling physicians about it.
Your own comments certainly confirm our sources' impression that the AMA is the originator of the use requirement. It takes an unqualified position on the need for consent for use "." It then goes on to recommend certain exceptions as for physicians who do not have a direct treatment relationship to a patient. Why should a radiologist be more trustworthy than the patient's personal physician? In any event, exceptions tend to be arbitrary and capricious by their very nature. The whole requirement needs to be eliminated. In this instance, the Department of Health and Human Services had it right in its advice to Congress: this requirement is totally unworkable.
I would be interested in receiving a copy of the any letters from the AMA recommending that President Bush put the regulations on hold. (I did telephone D.C. headquarters for more details about the AMA's position and was told that Jack Emery would call me back; he hasn't.)
I would also like to see any evidence that the AMA has supported Congressional efforts to delay or repeal these regulations. A resolution to that effect from the Arizona Medical Association was, as I understand it, referred to the board at the recent House of Delegates meeting. The reference committee, however, had recommended against its adoption.
If I have it wrong, and the AMA does not in fact support requiring consent for use, a simple letter to that effect would be most appreciated.
We think that a "just say no" position is perfectly appropriate when it comes to making medically sensitive information available without the patient consent, except in extraordinary circumstances of imminent threats to others or legitimate court orders. What position does the AMA take on that issue?
You have asked whether the AAPS met with HHS to provide recommendations to improve the privacy rule. In fact, AAPS has a representative at most meetings of the National Committee on Vital and Health Statistics. I believe that the AMA has a representative to this committee also, but the AMA's attendance record at meetings is poor.
You assert that we are telling the patient community that medical privacy concerns are not important. On the contrary, we believe that they are extremely important and that this rule destroys, rather than improves the protections.
I would appreciate a specific answer to my questions.
Jane M. Orient, M.D.