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MEDICAL PRIVACY
Mayo Clinic and Medical
Confidentiality
Mayo Clinic website on
Medical Records
Testimony before the National Committee on
Vital Health Statistics regarding the Patient Medical ID - July
20, 1998, focused on capability of linking lifelong patient records
for research
From The New England Journal of Medicine:
Quoting from "The Threat to Medical-Records Research,"
a 5-page article written by L. Joseph Melton III, M.D., Department of
Health Sciences Research, Mayo Clinic and Mayo Foundation (November
13, 1997). It addresses his concerns over the 1996 Minnesota medical
records law which gave patients the right to give or refuse access to
medical records by researchers:
"The availability of these records ['5.1 million patients treated
since 1907'] also allowed the development 30 years ago of the
Rochester Epidemiology Project, one
of the few sources of data on the incidence and outcome of disease
for a defined geographic population. The Rochester Project links Mayo
Clinic medical records for the residents of Rochester and of Olmsted
County, Minnesota, with those of the other major providers of health
care to community residents, thus ensuring nearly complete coverage
of the local population. This was possible because the law in
Minnesota, as in 22 other states, provided for 'the release of health
records to qualified personnel solely for the purposes of medical or
scientific research, if the patient has not objected to a release for
research purposes'...This unique data resource is now threatened by
growing concern about the privacy of medical data and about control
over such personal information, fears that are heightened in an
electronic environment...Since the vast majority of patients agree to
the broad use of their medical-records data for research, one has to
question this expenditure of scarce health care resources [to obtain
written consent before access]. Indeed, the overwhelming
preponderance of agreement is consistant with the notion of
"constructed consent" from the whole patient population...Since we
are all patients ourselves, it is easy to understand the desire for
privacy. It is also generally understood that there can be a conflict
between the personal interests of an individual patient and the
public health interests of society at large."
Portion of letter responding to Dr. Melton from Twila Brase,
R.N., President, Citizens for Choice in Health Care (published in
NEJM on 4/9/98):
Melton states that the Rochester Epidemiology Project,
begun 30 years ago, was possible because state law allowed researcher
access to medical records. Not so. Melton's quotation of the law
supporting his assertion actually comes from a 1992
statute...Melton's article fails to clarify under what statutory
authority this sharing of identified patient records in the Rochester
Project occurred...[Also] it is not comforting to patients that a
physician would advocate...'constructed consent' (majority-conferred
obligation)...
1997 law which favored Mayo Clinic's access to medical records
without patient consent:
In 1997, a Mayo Clinic lobbyist publicly testified for
an alteration to the 1996 law, which had
stated that all researchers must obtain consent before
accessing medical records generated after January 1, 1997. As a
result of the 1997 session amendment, patient consent requirements
were limited to external researchers only, not internal researchers,
and even that was weakened.
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