NEGATIVE — MEDICAL — DISADVANTAGES 257

PRIVACY PROTECTIONS HARMS THE DELIVERY OF MEDICAL CARE

OPEN SHARING OF TREATMENT INFORMATION CAN HELP MANY ILLNESSES

Julie Appleby USA TODAY, June 21, 1999, SECTION: LIFE; Pg. 5D, TITLE: AIDS patients to share treatment data on line; Privacy, accuracy are concerns in effort to spread knowledge // acs-VT2001

"This could work for any illness where people take different medications and there isn't a standard of therapy that you know works," says AIDS activist Larry Kramer, who came up with the idea. Amassing large amounts of data from many patients might help spot trends. "Perhaps one can learn something about toxicity of drugs that you might not learn from a smaller trial," says Anthony Fauci, director of the National Institutes of Allergy and Infectious Diseases, who is not involved with the project.

PATIENTS NEED AS MUCH INFORMATION AS POSSIBLE WITH WHICH TO MAKE CHOICES

Kasper Zeuthen, The Daily Yomiuri (Tokyo) September 7, 1999, SECTION: Pg. 7 TITLE: Reportage Nippon / Health information moves too freely in United States // acs-EE2001

"The feeling in the United States is that patients deserve as much information that they can get their hands on to make an informed choice about their health," said Robert Mills of the American Medical Association. "That goes to the heart of the patient-physician relationship."

RESTRICTING INFORMATION ACCESS MAKES CARE DIFFICULT FOR PATIENT AND DOCTOR

Kasper Zeuthen, The Daily Yomiuri (Tokyo) September 7, 1999, SECTION: Pg. 7 TITLE: Reportage Nippon / Health information moves too freely in United States // acs-EE2001

In some cases, restricting access to information can make life more difficult for the doctor and patient.

Maine enacted a law last January that barred the release of any information without the patient's written consent.

After it went into force, doctors caring for the same patient could not compare notes without seeking permission. Labs could not give patients information over the phone, and relatives could not simply call the local hospital to find out if a loved one had been admitted.

MEDICAL PRIVACY PROTECTIONS CAUSE HOSPITAL AND MEDICAL CARE CHAOS

Amy Goldstein, The Washington Post, August 23, 1999, SECTION: A SECTION; Pg. A01 TITLE: Long Reach Into Patients' Privacy; New Uses of Data Illustrate Potential Benefits, Hazards // acs-EE2001

But there also is evidence that the public does not want government protections to be too tight. Last January, a new law took effect in Maine that prohibited the release of any information about patients without their written permission. Facing a fine of up to $ 50,000 per patient if they violated the law, hospitals across Maine clammed up, refusing to give patients' medical condition to anyone -- or even to confirm whether they had been admitted.

Florists complained they could not make deliveries. Newspaper reporters complained they no longer could write about accident victims. Catholic priests motivated parishioners to lobby their state legislators, telling them they would no longer be able to get into hospital rooms to deliver last rites.

RELEASING ONLY SO-CALLED PERTINENT INFORMATION RISKS THE HEALTH OF PATIENTS

Mike Hudson, Knight Ridder News Service, The Denver Post, October 30, 1999 SECTION: A SECTION; Pg. A-02 TITLE: Clinton issues medical mandate Privacy standards toughened // acs-EE2001

But releasing only limited information also could be dangerous. Something pertinent could be left out and a doctor could then not fully understand a patient's history, leading to substandard care, said Kristin Bass, director of legislative affairs for the American Association of Health Plans.

ALLOWING PATIENTS ACCESS TO THEIR MEDICAL RECORDS WILL HARM THE ACCURACY OF THOSE RECORDS

Amitai Etzioni USA TODAY January 25, 2000, SECTION: NEWS; Pg. 15A TITLE: Our medical records are about to get more privacy // acs-EE2001

My concern is different. Ever since recommendation letters written by professors became documents their students could scrutinize, many professors have become rather leery about saying anything unflattering. Consequently, these letters have lost much of their value. If the same happens to medical records, physicians soon will cease to note that someone has alcoholic tendencies and instead may note that the patient has a "fine appreciation of wine." The notation "obese" will be replaced with "well nourished," and so on.

Doctors already feel beleaguered and flooded by paperwork. The last thing they want to do is quarrel with their patients over file notations. "I'll put in anything they want," said my wife, Dr. Patricia D. Kellogg, who practices in Rockville, Md.