The Health Care Financing Administration (HCFA),
the powerful bureaucracy that runs the Medicare program, is out of
control.
Under the pretext of regulating prices and
assuring "quality" services, HCFA has proposed a rule that would
force 9,000 home health care agencies (HHAs) to collect and report
sensitive personal information on their patients. This
information--to be collected without the patient's knowledge and
transmitted to a federal database--would include such data as
patient history and personal characteristics, including race and
ethnicity, living arrangements, and financial, behavioral, and
psychological profiles. The detailed record also would include
whether the patient had expressed "depressive feelings," a "sense
of failure," or "thoughts of suicide," or had used "excessive
profanity" or made "sexual references."
This
personal information eventually would be made available to state
governments. Moreover, the collection of data would not be confined
to Medicare patients. It would include patients who are not being
treated under Medicare and for whom no Medicare payment is being
made or sought. In other words, the Medicare bureaucracy would
intrude into private transactions that take place outside a federal
program.
Congress should realize that such abuse of
the patient's right to privacy is rooted in the top-heavy structure
of the Medicare program. For this reason, a strong majority on the
National Bipartisan Commission on the Future of Medicare favors
creating a new system based on patient choice, with less government
bureaucracy and paperwork. The chief model for this reform is the
Federal Employees Health Benefits Program (FEHBP), a patient-driven
system of competing private health insurance plans that is enjoyed
exclusively by Members of Congress and their staffs, federal
workers, and federal retirees. Until Washington is ready to make
serious Medicare reforms, Congress should put a stop to this latest
bureaucratic invasion of patient privacy.
Invading Patient Privacy.
HCFA's evolving database, the Outcome and Assessment
Information Set (OASIS), will include a data set covering each
patient's Social Security number, demographic characteristics,
living arrangements, and financial resources, as well as
information on sensory, respiratory, and elimination status, mental
state, behavioral characteristics, range of activities, medication,
productivity, and "quality of life" characteristics.
Unquestionably, data on health status that
are accurate, competently collected, and competently assessed would
be useful to health care providers and the families of the elderly
in the home health care system. But collecting this sort of
information to build a government database is another matter. For
example, Question 16 of the assessment asks whether a patient's
life expectancy is more or less than six months, with the
parenthetical qualification that "physician documentation is not
required."
Not
only would a patient's medical history and medical condition be
included in this detailed record, but so too would psychological
and financial status, family arrangements, and living conditions.
For example, Question 49 focuses on the frequency of behavior
problems, such as "wandering episodes, self abuse, verbal
disruptions, physical aggression, etc." Question 5 asks whether the
patient or the patient's family has the financial resources to meet
"basic health needs." Questions 18 through 22 inquire into a
person's living arrangements and the presence of residential
barriers to mobility and safety and sanitation hazards. It cannot
be doubted that most Americans would regard such questions as none
of the government's business, yet HCFA sees its data set as a work
in progress.
In a
December 15, 1998, letter to HCFA Deputy Administrator Michael
Hash, American Psychiatric Association (APA) counsel Jay Cutler
notes, "There is no requirement that patients would be asked for
their voluntary, informed consent before answering any questions or
that they would be informed that this information, including their
names, would be disclosed to the state and federal
governments."
Moreover, there would be no informed,
voluntary consent for non-Medicare patients who are being treated
through Medicare-approved HHAs. According to HCFA officials, the
Medicare bureaucracy needs to collect data on other Americans to
make sure that Medicare patients receive the same quality of care
as everyone else does, to facilitate HCFA's complex system of
administrative pricing, and to prevent fraud and abuse. But as
Janlori Goldman, Director of the Health Privacy Project at
Georgetown University, noted in The Washington Post on
March 11, "There has to be a way to check fraud and abuse without
intruding on patient privacy.... There's a tremendous risk of abuse
that the information will be used for other purposes."
Reading the Fine Print.
HCFA's proposed data collection is only the latest initiative
in a disturbing pattern of government-designed intrusion into
personal liberty and privacy. In the Health Insurance Portability
and Accountability Act of 1996, Congress enacted the framework for
a federal data collection system, including the storage and sharing
of patient records. In Section 4507 of the Balanced Budget Act of
1997, Congress, under pressure from the Clinton Administration,
imposed unprecedented restrictions on private agreements between
doctors and Medicare patients even where no federal tax dollars are
involved. In HCFA's recent regulations setting up the
"Medicare+Choice" program, medical records of seniors can be
disseminated without the voluntary and informed consent of those
patients.
Conclusion.
Congress and the Clinton Administration are supposed to
provide protection for the confidentiality of medical records this
year. Doctors and patients--taxpayers all--should ignore the
political rhetoric on this issue and read the fine print very
carefully. In the meantime, Congress should block intrusive
regulations and work to protect the privacy of every American.
Robert E. Moffit, Ph.D., is
Director of Domestic Policy Studies at The Heritage
Foundation.