Medical Privacy News Clips... S. 1360

[James Love <love@tap.org>]

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TAP/CPT INFORMATION POLICY NOTE
November 17, 1995

The following is a brief review of some of the newspaper coverage
of Tuesday's Senate hearings on S. 1360, the medical records
confidentiality act.

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The following quotes are from Gina Kolata's "When Patients'
Records are Commodities for Sale," which appeared in the New York
Times on November 15, 1995, in a page one (top of the fold)
story.  Gina Kolata is a staff reporter for the New York Times
who writes about science.  


Senate Robert Bennett (R-UT)

     Senator Bennett ... said he hoped the bill [S. 1360] would
     head off the cacophony of state laws that hinder the
     creation of large regional or national medical databases.


Dr. Paul Ling, a clinical psychologist in Quincy Mass:

     said he had to tell a case reviewer for a managed care
     company "the most gory details" about a patient who had been
     raped repeatedly by a family member when she was a child. 

Dr. Beverley Woodward, an ethicist at Brandeis University

     said that in the Boston area hospitals, employees "enter the
     entire patient record on line without asking for consent and
     generally without informing patients."  Any doctor at any
     affiliated hospital can log on and look at the record of any
     patient, including psychiatric records.

     [under S. 1360] ... A health agency that was curious about a
     possible link between abortions and breast cancer could pull
     up the medical records of all women who had undergone
     abortions.  "It could be a county agency."  Dr. Woodward
     said.  "They don't have to have any competence whatsoever."

Dr. Denise Nagel, psychiatrist and President, Coalition for
Patient Rights of New England [Note: testified against S. 1360 at
Tuesday, Nov. 14 Senate Hearing].

     She had become so concerned about privacy infringements that
     she advised patients not to seek insurance reimbursements
     because that can mean their psychiatric records would no
     longer be private.

     Dr. Nagel said the bill [S. 1360] "would actually legislate
     patient confidentiality out of existence."


Professor Lawrence O. Gostin, Georgetown University Law Center.

     "It is true to say that if you know a person's history of
     health problems, then you know more about that person than
     you would with any other data."

     . . . as medical records start including new genetic
     information that can predict diseases likely to show up in
     years to come, they will be able to reveal "not just health
     histories, but health futures."

     "This bill [S. 1360] doesn't protect privacy," Mr. Gostin
     said.  Even worse, he said, the bill is deceptive in both
     its name and its intent. 

     We need a privacy law, but one that protects the
     confidentiality of patients," Mr. Gostin said.  "We don't
     have that now and this bill is not going to give it to us. 
     It's a false promise."


George Annas, a health law professor at Boston University

     "This is certainly not a privacy statute.  It is a statute
     to enable large data banks to be set up; its the data bank
     efficiency act of 1995."


James Love, Director, Center for Study of Responsive Law's
Consumer Project on Technology

     said it was not acceptable to respond to a privacy problem
     by legalizing access.

     There is a provision in the bill [S. 1360] to let law
     enforcement agencies search medical records even if they do
     not know the name of the person whose records they want. 
     "They could say they're search for someone with a particular
     psychiatric profile and then get your medical records," Mr.
     Love said.  "To me, this is a super police state."


Janlori Goldman, Deputy Director, Center for Democracy and
Technology (note:  testified in Senate in favor of S. 1360 on Nov
14)

     Janlori Goldman . . ..  said the bill was not perfect
     because it was the result of compromise . . . but she said
     anything would be better than what exists now.  "If this
     bill [S. 1360] was passed today, we would have a victory on
     our hands."

Dr. Don Detmer, Vice President and Provost for Health Science,
University of Virginia in Charlottesville (note: testified in
Senate in favor of S. 1360 on Nov 14)

     "It is an incredibly important bill. . . the main thing this
     bill does is to put everybody on notice that if they are
     handling sensitive patient data, they have a responsibility
     to that data."

Leonard Rubensten, Director of Bazelon Center for Mental Health
Law in Washington.

     "Getting access to mental health records now is like a
     Hitchcockian nightmare" he said.  "Everyone involved in your
     treatment can get them, but you can't, especially if they
     say it's not in your best interests."
                                
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On November 15, 1995, the same day of Gina Kolata's story, the
New York Times published an guest editorial by Beverly Woodward,
a research associate in sociology in Brandeis, entitled
"Patients' Privacy at Risk."  Here are two excerpts:

     The bill's [S. 1360] real purpose is to set a uniform
     Federal standard for handling medical records in order to
     aid the computerization of these files and the flow of
     information across state lines, all in the name of more
     efficient care.


     "The Medical Records Confidentiality Act is fundamentally
     flawed.  We need legislation -- but legislation written to
     protect patients.  Doctors should act in defense of ethical
     standards they have committed themselves to uphold.  Let
     patients and physicians act together to protect our rights.

            ----------------------------------------

Also on November 15, 1995, the Washington Post ran a page two
story by staff reporter John Schwartz, entitled "Medical Records
Privacy Bill gets Airing at Senate Hearing."  Here are some
excerpts:

Dr. Denise Nagel, psychiatrist and president, Coalition for
Patient Rights of New England

     testified yesterday that the proposed bill "has been written
     to advance the interests" of the high-tech and health care
     conglomerates, and that because of exceptions to the bills
     coverage, "they would be able to careen full speed ahead to
     develop data networks that will give innumerable people
     access to our medical records legally and without our
     knowledge."

Senate Robert Bennett

     "I reject the characterization that [corporate interests]
     have controlled this process," he said. . . . He accused
     Nagel of demanding a law that would create a fail-safe
     system. "I can't do that, and no law can." he said.

CDT's Janlori Goldman

     "The Bennett-Leahy bill is the strongest piece of medical
     privacy legislation this Congress has ever considered."

EPIC's Marc Rotenberg

     "No one is trying to send America back into the dark ages on
     medical care, but a bad privacy bill will be worse than no
     bill at all."

        -----------------------------------------------

In "Strong Support Issued for Medical Records Confidentiality
Bill," the American Health Information Management Association
(AHIMA) took credit for its role in shaping S.1360.  These are
excepts from their November 14, 1995 press release.  Kathleen A.
Frawley, director of AHIMA's Washington office, testified that
day in the Senate in favor of S. 1360.  AHIMA, like Senator
Bennett, sees federal pre-emption as an important goal of the
legislation.

     "For 67 years, AHIMA and its members have assumed the
     responsibility for protecting the confidentiality of
     health information.  Our efforts have been complicated
     by the lack of federal pre-emptive legislation," said
     Frawley. "We believe the Medical Records
     Confidentiality Act of 1995 is a solution to this
     dilemma as it establishes a nationwide code of fair
     health information practices."

     Outlining the benefits of computer-based patient record
     systems for both patients and providers, Frawley also
     noted the need for such federal pre-emptive legislation
     to secure on-line medical information.

     "In order to move healthcare delivery systems into the
     twenty-first century, AHIMA believes that the nation
     cannot wait to enact federal pre-emptive
     confidentiality legislation.  It is critical and,
     arguably, the most important aspect of any healthcare
     reform effort," Frawley added.

     In February 1993, AHIMA drafted model legislative
     language used as the foundation for S. 1360, and upon
     its introduction was recognized for taking a leadership
     role in promoting the need for such legislation.

     AHIMA is the professional organization of more than
     35,000 experienced specialists in health information
     management. Members are experts in securing, analyzing
     and integrating the information that steers the
     healthcare industry.  AHIMA supports quality patient
     care through advancing data accuracy, advocating
     confidentiality and championing new technology.

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