Consumer Groups Call for
Consumer Protection Framework on
HIT
February
16, 2007
The
Honorable Edward M. Kennedy
Chairman, Committee on Health,
Education, Labor, and Pensions
United States Senate
Dear
Chairman Kennedy,
As organizations committed to
fostering improvement in the
quality, safety, and efficiency
of the American health care
system, we are writing to urge
you to address the need for a
comprehensive, thoughtful
approach to the privacy and
security of health information
in the development of health
information technology (HIT)
legislation. We believe that
access to nationwide,
interoperable HIT is key to
achieving the broader goal of a
high quality, safe, and more
efficient health care system.
However, any legislative or
administrative effort to expand
the use of HIT must address
privacy and security policy
issues as an integral part
of the process. The
standards set by the HIPAA
Privacy Rule are not
sufficient. At the most basic
level, the HIPAA Privacy Rule
does not even apply to many of
the core organizations upon
which the Nationwide Health
Information Network is being
built.
Over the past two years, many of
us have committed substantial
time and resources to
participating in Administration
initiatives to create a
Nationwide Health Information
Network, including serving on
the Health Information
Technology Harmonization Panel
and policy workgroups of the
American Health Information
Community (AHIC). To date, we
have been disappointed by the
Administration’s lack of real
commitment to the privacy,
confidentiality, and security of
patients’ health information.
As proposed standards are being
tested, and initial product
certification is being granted,
major gaps remain in both
privacy and security standards,
and the Administration appears
to have little sense of urgency
in addressing those gaps.
Furthermore, the Secretary of
HHS has yet to respond to the
most thoughtful report on the
issue from his own advisory
committee – the National
Committee on Vital & Health
Statistics (delivered in June
2006, online at
http://www.ncvhs.hhs.gov/060622lt.htm).
To underscore our concerns, we
would like to call your
attention to a recent GAO report
titled, HIT: Early Efforts
Initiated but Comprehensive
Privacy Approach Needed for
National Strategy, available
online at
http://www.gao.gov/new.items/d07400t.pdf.
The report, released in January
2007, states: “An overall
approach for integrating [HHS’]
various privacy related
initiatives has not been fully
defined and implemented….much
work remains before they are
completed and the outcomes of
the various efforts are
integrated.” The GAO found,
further, that “ it has not been
determined which entity
participating in HHS’s
privacy-related activities is
responsible for integrating
these various initiatives and
the extent to which their
results will address key privacy
principles.”
As you consider HIT legislation
in this Congress, we urge you to
insist that the development of a
coherent consumer protection
framework for HIT be given the
highest priority. To help
achieve this, we propose that
any HIT legislation authorize an
independent, non-partisan
advisory body charged with
developing a national,
government-wide HIT policy
framework to ensure the privacy
and security of consumers’
health information. Winning
consumer trust in the health
system’s ability to protect
their personal information is
critical to gaining widespread
participation in any such system
– and thereby realizing HIT’s
promise to improve health care
for us all.
We have attached a more
comprehensive summary of our
proposal, and look forward to
working with you as HIT
legislation moves forward.
Please contact any of us if you
have questions or need more
information.
Sincerely,
National
Partnership for Women and
Families
AFL-CIO
AFSCME
American Association of People
with Disabilities (AAPD)
American Federation of Teachers
Bazelon Center for Mental Health
Law
Center for Medical Consumers
Childbirth Connection
Consumers Union
Department for Professional
Employees, AFL-CIO
Health Care for All
Health Privacy Project
International Union, United Auto
Workers
National Committee for Quality
Assurance
National Consumers League
National Health Law Program
Service Employees International
Union
Title II Community AIDS National
Network
United Steelworkers
International Union (USW)