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PUBLICATIONS
Public Health Rails Against Patient Privacy
Published by the Texas Society for Psychiatric Physicians Newsletter, Dec/Jan 2001
Shortened variation of speech
presented to the
Texas Medical Association
annual meeting 5/26/00.
By Twila Brase, R.N., P.H.N.
President
Citizens' Council on Health Care
Although privacy at all levels is a pressing issue in
Congress, mighty forces are striking against preserving the right
of privacy for patient medical records.
The public emphatically supports the right of patient privacy.
A 1993 Harris poll found that 97% of respondents believed in the
importance of protecting the confidentiality of individual medical
records, with 36% classifying such protection as "absolutely
essential." Patients know that inappropriate or malicious use of
medical information can be devastating: marriages shattered, jobs
lost, insurance denied, political campaigns crushed.
Yet despite the public's concern, there is an enormous push at
the state and federal government level to make the patient's
medical record an open book&emdash;preferably an online open book.
Although federal officials expound repeatedly on the importance of
privacy, their definition of privacy obviously begins in the
government cubicle, not in the doctor's exam room.
In 1996, Congress passed the Health Insurance Portability and
Accountability Act (HIPAA), ushering in mandates for electronic
processing of medical record information. Therefore, Congress
mandated themselves to pass medical privacy legislation by August
1999. When they failed to meet the deadline, Secretary Donna
Shalala of the Department of Health and Human Services wrote
regulations ostensibly to protect medical privacy but doing
nothing of the sort. Her department, using the key words of
"public health," "public interest" and "public goals," took the
opportunity to use regulatory power to dismiss patient consent and
confidentiality under the guise new department-generated public
health "priorities." For example, in the proposed regulations
published November 3, 1999 she wrote:
"The disclosures we propose to allow in this rule
are...necessary for smooth operation of the health care system and
for promoting key public goals such as research, public health,
and law enforcement. Any limitation on such disclosures could do
more harm than good."
Such disclosures would not only be permitted. They would have
federal authorization and protection. The regulations make it
clear that these disclosures by doctors and hospitals are not
mandatory, however, the permissibility will increase disclosures
and weaken ethical objections. In fact, non-disclosure to
government officials may be seen as reason enough to initiate a
federal fraud investigation, an expensive proceeding every
practitioner wishes to avoid. Simply put, professional and
ethical responsibility to patients may come in conflict with
financial interests.
Government health officials clearly intend to use public
health as a tool to pry open the medical record. While they
acknowledge that individuals "have an interest in maintaining the
privacy of [their] information" they reject patient consent
outright asserting that "many important public health activities
would not be possible if individual authorization were required."
This follows the tenor of Shalala's shockingly frank September
1997 recommendations. After a sweeping acknowledgment of the "age
old right" of patient privacy, she announced the creation of new
national priorities which would open medical records to countless
outsiders without patient consent.
Secretary Shalala wrote, "Individuals' claims to privacy must
be balanced by their public responsibility to contribute to the
common good, through use of their information for important
socially useful purposes..." She then recommended that Congress
"authorize disclosure of health information without explicit
patient consent for four national priority activities" including
oversight of the health care system, health research, public
health and emergencies which affect life and safety, and a fourth
broad category of other laws or court orders, including access for
law enforcement and state health data systems.
According to a 1988 definition put out by the Institute of
Medicine, the mission of public health is to "fulfill society's
interest in assuring conditions in which people can be healthy."
Public health obligations once centered around safe food, safe
water, and eradication of communicable diseases. However, because
the Institute's definition of public health is so broad, it
virtually invites state and federal intrusion in citizen lives.
Every breath breathed and every action taken impacts health.
Whether we drink pop or bottled water counts. Whether we act on
stage or jump out of planes changes our risk. Who we know, how
many hours we work, and whether we have children all affect our
physical and emotional health. Our health is always on the line.
The question citizens need to ask is this: Do public health
officials have the right, or should they be given the authority,
to use the natural risks, problems, behaviors and medical
conditions of life as a license to put citizens under state
surveillance? This is a timely question because the ability to
conduct detailed surveillance on civilians has expanded with the
development of electronic data systems and the Internet.
Consider the OASIS home health data collection system. OASIS
was created by federal officials who used regulations to expand
federal legislation to suit their own desires, much as they intend
to do with the medical privacy regulations. Legislation enacted in
1986 authorized the Department of Health and Human Services to
measure the quality of home health services by surveying a sample
of home health patients&emdash;but only with their consent.
Instead, the final OASIS regulation published in 1999 forced
the collection of financial, behavioral, medical, psychological,
educational, demographic, housing and relationship information on
most non-maternity adult home health patients&emdash;all without
consent. This includes patients who pay with cash, have private
insurance or are on a government program. Patients can refuse to
answer the 19-page questionnaire, but the home health nurse or
physical therapist must complete the questions with an educated
guess. The information is then sent to a State agency where it is
transmitted electronically to the Federal government for permanent
accumulation and for "routine use" by several approved entities
including researchers.
Home health agencies serving Medicare patients cannot refuse
to comply. The Administration made provider compliance a condition
of participation in Medicare. If they want reimbursement, agencies
must report on their patients to the government.
These onerous data collection efforts are not limited to the
federal government. Without consent and under the guise of public
health, state public health departments are entering children on
electronic immunization registries and birth defect registries.
Few consider the fact that these registered children will grow up,
turning immunization registries of children into government
inventories of citizens. All citizens, not just children. And
alongside this comprehensive directory of citizens will be a
registry of so-called defective citizens.
But public health officials want still more data. They want
complete access to the medical record of every citizen, a goal
only achievable through trackable, linkable electronic medical
records which are the modus operandi of HMOs. Thus, according to
a lengthy 1997 publication out of the Center for Disease Control
and Prevention's (CDC's) National Center for Chronic Disease
Prevention and Health Promotion ("the Center" ), managed care has
become essential to the public health agendas of state and federal
agencies.
In the CDC publication called, "Public Health and Managed
Care: Data Sharing for Common Goals," Betsy Thompson, the Center's
Medical Epidemiologist and Managed Care Coordinator, says, "CDC's
involvement with managed care...does signify our understanding
that this is an unprecedented opportunity to have access to the
general population for intervention research, improvement of
health care delivery, and disease prevention and health promotion
activities."
Stop for one minute and reflect on that statement. This is a
government official speaking. The desire here is to get access to
the private public. The everyday, tax-paying, self-supporting
citizen. Not just those receiving government health care services.
Public-private partnerships between government agencies and
managed care are key to this access. Enrollment in a managed care
plan usually requires enrollees to sign a blanket consent. The
plan is thus authorized to access the patient's medical records at
virtually any time for any purpose for anyone they choose. This
includes the government. Even the proposed medical privacy
regulations state that public health activities depend on
"resources such as HMO claims databases and medical records." To
share data between managed care and public health, Dr. Gail Janes
of the CDC suggests that private health plans combine their
clinical data with data from public health registries, and public
health departments use physician data to build high level
population-based databases. In addition, she says public health
agencies could improve surveillance by collecting data
automatically at the point of care.
Automatic collection by government agencies clearly requires
online medical records and unique identifiers. This explains Dr.
Janes enthusiasm over HIPAA's requirement that patients,
providers, employers, and health plans be uniquely identified by a
single number. She notes that, "Unique identifiers will...
facilitate linkage of data into comprehensive, longitudinal
records, which span time and varied points of service."
In other words, if you're in a managed care plan, or if you
have an electronic or online medical record, there will be little
protection from state surveillance. Managed care organizations
hold large groups of captive patients, captive doctors and captive
data. Becoming a subject of government monitoring and research may
no longer be an option for patients.
Unfortunately, the emphasis of public health and managed care
centers on populations, not patients. Therefore, privacy rights
and professional ethics are treated more as obstacles than assets.
However good-intentioned this population-based thinking may
be, it will prove devastating to the health care system and the
patient-doctor relationship which is so critical to good patient
care. According to a 1999 California Healthcare Foundation survey,
15% of 1000 survey respondents already engage in evasive action to
protect their medical privacy.
Just knowing that government officials and their researchers
have come uninvited into the exam room will shatter the
increasingly fragile integrity of our medical system. Patients may
delay seeking medical care. Incomplete information may lead to
incorrect diagnoses and ineffective care. And worst of all,
clinics will no longer be confidential, just-between-you-and-me
havens for people in need. They will become opportunistic research
laboratories for government peep squads.
Given historical precedent, public health officials are
probably hopeful, maybe even tentatively celebrating. Regulations
tend to take on the rule of law no matter how much public
opposition exists. Unfortunately, even Congress can't be counted
on to step in and save privacy. Many so-called medical privacy
bills introduced in 1999 would have opened medical records as wide
as Shalala's regulations.
Clearly, public health officials and members of Congress have
forgotten who the health care system is for. It's for patients.
The frail grandma down the block, the shy girl with anorexia, the
baby with twinkling eyes and two club feet, and the politician
with a life-threatening disease. These patients, like all
patients, want only two things from their health care system. Care
and confidentiality.
Policy makers and public officials need to remember this one
thing: when the health care system does not work for individual
patients, it does not work. If public health officials insist on
opening the medical record to prying eyes, they will have bigger
problems than imperfect immunization compliance. A distrusted,
dysfunctional health care system could become the most serious
risk to the public's health that this country has ever faced.
That's what public health officials should be worrying about.
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Citizens' Council on Health Care
1954 University Avenue West, Suite 8, St. Paul, MN 55104
Phone: 651.646.8935 / Fax: 651.646.0100, e-mail
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