Medical Privacy vs. the Public Interest: A Reporter's Guide

Article excerpt

interaction warning: medical privacy and the public intgerest don't always mix

While covering the September 11 devastation for radio station WNYC, Marianne McCune saw the distraught masses skirting past the debris of the World Trade Center as they floated from hospital to hospital, searching - too often in vain -for lost friends and family.

They would go from New York University Medical Center and then to Bellevue Hospital and then to other hospitals, checking closely a list of more than 1,000 people confirmed to have been treated in New York-area hospitals after the attack.

Seldom did the searchers get the assurances they sought, McCune noticed. But at least they got some definitive information that their loved ones were not there and could focus their searches elsewhere. McCune lauds the openness of hospital officials on that day.

"There was so much information going around those days that to have reputable sources saying these are the patients we have in our hospitals was important," she said. "Television and news reports about unnamed people in hospitals just created a lot of chaos. Better the information come from people who really know."

But in a different scenario, one with new federal medical privacy rules in place, McCune and others might have experienced something different. She declines to speculate on exactly how the new rules would affect disaster coverage in the future, but suggests that a lack of openness might have forced desperate relatives to make runs on local hospitals to ensure their loved ones did not occupy beds there.

Sweeping new medical privacy rules issued by the Clinton administration in December 2000 and endorsed somewhat by the Bush administration threaten to slam the door shut on a vital source of information in the coverage of tragedies, disasters and medical issues. The Standards for Privacy of Individually Identifiable Health Information, designed to improve patient control over their own records, offers little or no consolation to journalists, who use hospital and other medical records to inform the public about health and emergency matters.

Stories from September 11, the Oklahoma City bombing, the anthrax scares and other events could be severely stifled without reporter and public access to hospital directory information and other record sources. Details about when important political and public figures go into the hospital - such as President Bush's recent colon examination or Vice President Dick Cheney's heart surgery - could go unpublished.

Brant Houston, executive director of Investigative Reporters and Editors, said many of the group's members worry about access to many health and medical records they use not only for investigative reports but for day-to-day reporting.

"I know there is a great deal of trepidation out there about being able to get even the most basic information, such as when someone goes to the hospital because of an accident or an emergency," Houston said. "That alone is something we've done on a daily basis."

Apprehension about the rules stretches back to Oct. 29, 1999, when the Department of Health and Human Services first unveiled the sweeping medical privacy rules. The rules were designed to improve patients' access to their medical records; narrow instances where such information maybe released to other physicians, health care providers or researchers; and require written authorization for use and disclosure of health information for other purposes.

Spurring the rule proposal was the 1996 Health Insurance Portability and Accountability Act, often referred to as HIPAA, which stated in part that if Congress did not pass health-privacy legislation by August 1999, HHS officials would issue a set of rules. Congress missed the deadline, leaving the Clinton administration to draft a proposal.

Department officials say the absence of a national standard concerning the confidentiality of health information has caused both patients and the health care industry great anxiety concerning the handling of such records. …