Bush Plan Would Lessen Patients' Say on Records
By Amy Goldstein
Washington Post Staff Writer
Friday, March 22, 2002; Page A01
The Bush administration yesterday proposed changing some of the federal
rules designed to protect the confidentiality of Americans' medical records,
including the ability of patients to decide in advance who should be able to
use their personal health information.
The proposal would alter a federal safeguard, adopted by the Clinton
administration, that compels patients to give written permission before
their records may be disclosed to doctors, hospitals, pharmacies and
insurance companies. The new version would erase that requirement and,
instead, say that patients must at some point be notified of their privacy
rights by those who use their records.
In other changes that would loosen privacy rules, the administration
wants to enable more parents to find out what medical services their
teenagers seek and make it easier for researchers to gain access to
patients' records. In addition, business associates of various health care
providers would be given more time before they have to follow the
But in at least one respect, the administration is suggesting a
significant strengthening of privacy rights by allowing patients to decide
up front whether to allow their records to be used for marketing purposes.
The proposal, issued yesterday by federal health officials, represents
President Bush's effort to tailor a policy that has daunted presidents and
lawmakers for years: how much control to give consumers over the
proliferating access to medical records in an electronic age.
Last April, Bush announced that he would move ahead with the medical
confidentiality regulation adopted by President Bill Clinton -- but
indicated he would modify some rules to make them simpler and less onerous
for health care companies and practitioners.
Yesterday, in disclosing what form those modifications will take, Health
and Human Services Secretary Tommy G. Thompson said, "The changes we are
proposing today will allow us to deliver strong protections for personal
medical information while improving access to care."
The new version was largely criticized by privacy advocates, physicians
and Democratic leaders on health care. But it was hailed by the insurance
industry. "It's a major step toward creating a workable rule," said Karen
Ignagni, president of the American Association of Health Plans. She and
other insurance representatives, however, contended that the administration
should go further to ease regulatory costs and give the industry adequate
time to adapt to the rules.
Administration officials said they will allow a relatively quick,
one-month period for outside comment on its proposal, before HHS
administrators begin to refine it and issue a final version. It does not
require congressional approval.
In the meantime, the parts of the Clinton-era rules with which Bush
agrees have taken effect, although health care providers will not be
required to comply with them until next year. The basic aspects that remain
intact guarantee Americans the right to inspect their own medical records
that are kept in electronic form, determine who else has seen them, and
complain when they are used without permission.
The proposed changes are the latest phase in a controversy that has
shuttled up and down Pennsylvania Avenue for years. In 1996, as part of a
broader health reform law, Congress set itself a deadline for adopting
patient-privacy protections, saying it had to do so within three years or
cede that authority to HHS.
When lawmakers missed that deadline, Clinton's aides began writing the
rules, which they finished shortly before he left office. Once Bush took
over, opponents of the regulations resumed fierce lobbying, trying to
capitalize on what they sensed was a more lenient attitude in the new
administration toward federal regulation. Yesterday's proposals provide the
first insight into how far Bush wants to go to address their complaints.
HHS civil rights officials, who briefed reporters on condition of
anonymity, said that what they called "very targeted changes" were intended
to protect patients' privacy while simultaneously eliminating facets of the
original rules that they said would interfere with patients' access to care
-- and weaken its quality. That reasoning essentially embraces the arguments
the insurance industry has raised.
Specifically, the new version strikes a different balance in patients'
control over access to their records.
While eliminating the requirement that consumers must give written
consent for records disclosure, HHS officials said, the proposal would
strengthen the requirement for health care providers to make sure patients
are aware of their privacy rights. Doctors, pharmacies and others who use
records would have to make a "good faith effort" to obtain written
acknowledgment from patients, although not necessarily ahead of time, that
they had been told about privacy practices.
HHS spokesman William Pierce said the revision would avert the
possibility that "you could have been stopped in your tracks" from getting
needed treatment for failing to give permission for use of records.
Janlori Goldman, director of Georgetown University's Health Privacy
Project, said the elimination of advance permission "cuts the legs off the
privacy regulation." Sen. Edward M. Kennedy (D-Mass.) said that giving
permission before personal medical information is disclosed "is central to
protecting people's medical privacy." And Donald Palmisano, the American
Medical Association's secretary-treasurer, said, "there is more opportunity
for patient privacy to be violated now."
In another contentious change, the administration's proposal would make
it easier than Clinton intended for parents to see their children's medical
records in any state that does not have a law that specifically guarantees
minors their medical privacy rights. Privacy advocates said that change
would deter teenagers from seeking sensitive health services, such as
abortions or treatment for mental illnesses or sexually transmitted
© 2002 The Washington Post Company