Journalists express concern over proposed health-privacy rules

Tuesday, December 7, 1999

Two months after the death of an 18-year-old Pennsylvania man participating
in experimental gene-therapy treatment, medical reporter Donald Drake provided
Philadelphia Inquirer readers access to a frank discussion among doctors
and hospital staff about what had gone wrong.

Drake credits his ability to get the story, published in the Dec. 2 edition
of the Inquirer, partly to the level of confidence and trust he has built
with doctors and hospital officials over more than 30 years of health reporting.
Since 1966, Drake has made it his routine to follow doctors, nurses and medical
students on their rounds through Philadelphia-area hospitals.

But some say such newsgathering efforts are threatened by proposed federal
health-privacy regulations designed to give patients more control over their
medical information. The proposed rules, as drafted by the Department
of Health and Human Services, would forbid the release of most hospital and
related-health records without the express consent of the patient.

Drake reasons that, should such rules be enacted, his hospital visits might
come to an end or might be altered in such a way that he wouldn't have the same
access he's enjoyed in the past.

“I can see, in an environment like this, doctors telling me, 'We can't have
you following us around anymore because it would be an invasion of privacy under
these rules,' ” Drake said. “If they did let me follow them,
I would probably have to read every patient I meet the equivalent of the Miranda
rights. Then my stories would be about how sick people deal with reporters.”

On Oct. 29, the Department of Health and Human Services unveiled sweeping new
rules designed to protect the privacy of patients' medical records. Such rules
would improve patients' access to their medical records; narrow instances where
such information may be 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 is the 1996 Health Insurance Portability and
Accountability Act, which stated in part that if Congress didn't pass
health-privacy legislation by Aug. 21, 1999, the Department of Health must enact
a set of rules.

Congress missed its deadline, so President Clinton released the Health
Department's proposal. The department is accepting public comment through Jan.
3, 2000, and is required to issue final regulations by Feb. 21, 2000.

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.

In briefs about the proposed rules, federal health officials note that a
Wall Street Journal-ABC poll released in September found that 29% of
respondents considered “loss of personal privacy” as the first or second most
pressing issue for them in the coming century. All other issues, including
terrorism, global warming and threat of world war, posted scores of less than

“Many plans, providers, and clearinghouses have taken steps to safeguard the
privacy of individually-identifiable health information,” the officials wrote in
justifying the rules. “Yet they must currently rely on a patchwork of State laws
and regulations that are incomplete and, at times, inconsistent.”

Health-privacy advocates praise federal health officials for tackling the

“People are withdrawing from full participation in their own health care
because they are afraid their health records will fall into the wrong hands and
lead to discrimination, loss of benefits, stigma, and unwanted exposure,” said
Janlori Goldman, director of the Health Privacy Project at Georgetown
University, in a written statement.

But press advocates warn that if the proposed rules go into effect without
revision, they could create problems for news organizations trying to obtain
even the most basic information about hospital patients.

Specifically, they fear the rules would stifle release of routine statements
concerning general patient condition to news organizations, family members and
other groups.

According to the department proposal, the rules “would require the covered
entity to ask whether information about the individual's presence in the
facility, room number and general condition can be included in the general
patient directory. When individuals are capable of making such a determination,
their wishes should be respected.”

“For the most part, we don't have problems with 95 percent of the new rules,” said
Joel Campbell, a member of the Society of Professional Journalists' committee on
freedom of information. “I think most of us want that kind of protection. But I
think, on the other side of this coin, people are interested in knowing some of
this information. They want to know how people fared in the accident they passed
on the street.”

Specifically, Campbell referred to the aftermath of the 1995 Oklahoma City
bombing, noting that people worldwide wanted the names and conditions of people
hospitalized in the incident.

“In disaster situations, you don't want these kinds of rules in place,”
Campbell said “You want to have the ability to get this type
of information out. People appreciate that kind of information.”

And such reporting is widespread, Campbell said. A search
on the Dow Jones News retrieval database found no fewer than 28,400 newspaper
articles reporting either serious or critical medical conditions of public
officials, public figures or victims of accidents or crimes.

Campbell said SPJ planned to encourage Health Department officials to revise
the proposed rules to allow hospitals to release information without express
patient consent when: patients are under arrest or held under police
surveillance; patients are transported to the hospital by a public safety
agency; patients are involved in shootings, stabbings, poisonings or other cases
that are reported to government agencies or in unusual industrial accidents;
patients are public officials; disclosure is warranted by general emergency or

Zoe Hudson of the Health Privacy Project agreed that the proposed regulations
would require health-care officials to get permission in order to release
medical information. But she said officials in some instances might be able to
release such information anyway, although she didn't specify in which situations
this might be the case.

Hudson wouldn't comment on SPJ's concerns, adding that her group hadn't
finalized all its positions on the regulation.

Federal health officials didn't return calls.

Drake of the Inquirer says he understands the need for privacy,
recalling how he nixed a story in 1975 about two parents finding out their son
had leukemia. He came upon the story during one of his hospital rounds.

Drake said he killed the story when he learned that the family, whom he
hadn't interviewed, didn't want the publicity.

Because of his willingness to protect the family's privacy, Drake said he was
able to persuade the hospital to allow him to watch doctors' effort to separate
a pair of Siamese twins born with a single heart several months later.

The subsequent story, carried worldwide, explored the moral issues of
separating the twins, causing one to die so that the other might survive.

But he said creating a national set of guidelines governing how hospitals
release such information might “create a climate that would be more disturbing
than the rules.”

“I have to say that an awful lot of stuff we do makes the argument for
substantial privacy protection,” Drake said. “I think it might protect patients
from exploitative journalists, but it also makes it difficult for journalists
who can do a lot of good with their stuff.”