In October of 2008, Modern Healthcare published a series of
reports on the potential implications of the Total Information Act
(TIA-later the Terrorism Information Act) on healthcare data. Following the 9/11 attacks, TIA assisted
authorities in their search for potential terrorism threats occurring inside
the country. Though struck
down in 2003 following the media attention surrounding telecommunications surveillance
without citizen knowledge, some remnants remain and raise questions about
medical information and government access.
Journalist Joseph Conn chronicled how the TIA could be used as a
vehicle to access and monitor personal healthcare information. Now that
electronic health records or EHRs are in full swing as the centerpiece
of the government's plan for
healthcare system cost savings (via the American Reinvestment and
Recovery
Act, ARRA), there are questions as to how all this data will be stored,
secured, and ultimately used.
According to Mr. Conn, the government has a
potent history in some people's minds of secretly accessing and using patient healthcare data for
purposes declared as national security. Examples include: federal agents
accessing a college student's medical record in an anti-terrorism
investigation, government's lack of HIPPA enforcement regarding a
security breach involving patient's medical records, and $711 million
dollars slated for terrorism surveillance (see the series).
Additionally,
there is frustration that a new ruling from the U.S. District
Court that protects the past actions of the telecommunication community
will
also deter any e-discovery regarding whether or not medical records
were
accessed as a part of the TIA initiatives during the Bush
Administration. Consumer groups are angered by the level of secrecy and
uncertainty of past
actions by the government in the name of national security and further,
they
fear the future potential for far more detrimental use of personal
medical
information.
Those involved in the IT business argue that these are
unfounded conspiracy theories. The Health Care Information and
Management
Systems Society (HIMSS) maintains that people in their organization-IT
professionals-are not ‘talking' about government intrusion. Lisa
Gallagher, the senior privacy and security director of HIMSS, comments
that
while she is aware of data breaches it is not "in the context of risk
from the government." On the opposing front, Twila Brase, president of the
Citizen's Council on Health Care, a consumer advocacy group for patient
privacy maintains that since the 9/11 attacks, the government has expanded its
surveillance powers and personal medical records are fair game.
There is a tradition of health monitoring in our country by
the Center for Disease Control (CDC)-proven to be a necessity as
exemplified by the current H1N1 pandemic. The CDC
plays an important role with respect to bioterrorism surveillance and alerts. What remains, however,
are some serious questions about the plan to collect, analyze and
publish data about the quality of healthcare. The Obama Administration still
has many questions to answer as to how medical data will be used. For
instance, will data be used to analyze the cost of certain procedures relative
to others? Will insurers be able to use the data to omit coverage of some
procedures even if deemed necessary by a physician?
There are numerous initiatives that are currently developing best practices as a vehicle for reducing unnecessary procedures
(and costs)-the work of the Agency for Health Care Research and Quality
(ARHQ) is a leading funder of such projects. While the door may be closed to
past infractions, as noted by Mr. Conn, there are pressing issues surrounding
quality measurement-the touted goal of data interoperability and
collection at the federal and state levels.
If we are to truly make healthcare more efficient, then data and "surveillance" is necessary to better understand what works and
what does not. However, the short history of EHRs appears to be muddied by the
TIA, raising doubts about the government's intent. It is the job of the
new Administration to bring into focus the line between national security and the
preservation of personal liberty.
More on EHRs:
[+] Choose your electronic health record carefully
[+] Doctors aided by emerging offshoot of EHR software
[+] DOD and the VA stumble toward shared EHR system
[+] EHR standards committee meets and prepares to sprint
[+] New study cites poor uptake of electronic health records
[+] Patients cheer on EHR technology, not afraid of privacy risks