Volume 62, No. 1 April 2006
INFORMATION STRAITJACKET
In 1993, the Clinton Administration proposed to force all
Americans into government-dictated health plans, engineered by
special interest groups meeting behind the scenes under the aegis
of the Health Care Task Force.
The Bush Administration just wants to control information
through forcing the adoption of a “nationwide interoperable
health information technology infrastructure.” The ability to
monitor practice is the key to enforcing standards and
controlling behavior. This time, the chosen architects are called
the American Health Information “Community.” AHIC is acknowledged
to be subject to the Federal Advisory Committee Act (FACA), under
which AAPS compelled exposure of the Clinton Task Force
operations.
While AHIC is going through the motions of FACA compliance,
it is violating fundamental substantive provisions of the law,
prompting AAPS to file a lawsuit (see p. 3).
Justification
The rationale for tyranny is to protect the public. Health
information technology (HIT) is supposed to protect against
bioterrorism, hurricanes, and pandemics and medical errors and
runaway costs. “With employer health-care costs growing faster
than revenues, and more people dying in the U.S. of medical
errors than AIDS, homicides and automobile crashes combined,”
writes Carol Kovac of IBM, “transforming health care…has become
a matter of national security in both human and economic terms.”
We need a “digital health-care ecosystem” (Wall St J
10/25/05).
The Institute of Medicine report “To Err Is Human,” the
basis for the belief that physicians are the eighth leading cause
of death in the U.S., is accepted as common knowledge. Yet, as
previously noted (AAPS News, Jan
& Apr 2000, Mar
2004), the analysis is deeply flawed. The purported 44,000 to
98,000 annual deaths are extrapolated from a study of 137 deaths.
A.E. Miller, M.D., of Blackfoot, ID, writes that imputing
the death of a comatose metastatic cancer patient to his doctor’s
mistakes is “like saying the Titanic sank because someone dropped
an oar from one of the lifeboats.”
The Cost of HIT
While some believe that the electronic medical record (EMR)
would reduce paperwork and costly medical errors, the cost
savings would be no more than 3% (LA Times 1/30/06).
Some systems require more time and effort from the user than the
paper systems they replace (Fraser Forum, Oct 2005).
Today’s HIT asks doctors to pay an “unconscionable price
…for these mediocre products,” writes Jonathan Bertram, M.D.,
founder of Amazing Charts. Most systems cost more than a new car,
and will “end up upsetting us more than if we had paid $100,000
for a Pinto” (www.mdng.com, October 2005).
Such considerations help to explain why only 17% of office-
based physicians are now using EMRs.
The object is to connect the EMR to performance measures.
The AMA, in its recent deal with Congress (AAPS News of the Day
2/21/06), agreed to develop 140 measures by the end of the year.
According to a memo from Michael Maves of the AMA to officers of
medical associations, the AMA will work to reduce administrative
burdens by having all programs use the same CPT-II codes (sold by
the AMA) instead of having Medicare develop codes.
As Dr. Bertram points out, doctors will be forced to use a
controlled vocabulary, which turns a patient-doctor encounter
into an inventory of data points and then be “charged a fee to
use the dictionary” (op. cit.).
The Blunt End
There is little evidence that the use of HIT to improve
safety has any sustained positive effect. It can, in fact, be
detrimental, as shown in the comparison of manual control of
infusion devices with programmable pumps, or the use of a status
board for OR scheduling with a computerized system. One reason is
the very poor understanding of what human beings at the “sharp
end” of patient care actually do. HIT developed to serve
management, the “blunt end,” which uses policies, procedures,
resources, and constraints. Blunt HIT can hamper cognitive work
and complex human interactions in patient care (Nemeth C, et al.
J Biomed Informatics 2005; 38:18-25, available at www.sciencedirect.com
).
As Richard Warner, M.D., President-Elect of the Kansas
Medical Society, noted, performance measures “may be more about
the value of third party payment managers than about the value of
doctors.” And quality will be a statistic, not a patient-
determined value (Kansas Physician, July/Aug 2005).
Adverse Consequences
A nationwide interoperable system cannot protect privacy. A
security company hired by the VA Inspector General easily broke
into the computer system and took total control of it while the
VA didn’t even know its systems were under attack (Cato Policy
Analysis 520, 8/4/04).
But privacy may actually be seen as an impediment to
quality: Our national system “can no longer beguile itself with
the myth that quality care involves only one doctor and one
patient in a room where confessions are made and promises are
kept,” stated an AHA lawyer. A physician encounter is just an
entryway to the system (American Psychoanalyst, Fall
2005).
The result, if not the purpose, of the straitjacket is
apparently to assure that all get exactly the care they are
supposed to have according to the elite decisionmakers in the
government and the “community” of the elect.
Database Nation
The federal government collects breath-taking amounts of
information on Americans, and federal agencies can combine
databases at will, simply by announcing a new “routine use” in
the Federal Register. Providing entitlement benefits and
collecting taxes are two prominent uses. But databases have a
tendency to grow and acquire new uses, sometimes radically
divergent from their original purpose. The National Directory of
New Hires, for example, which catalogs everybody in order to
locate the few who default on child-support obligations, is now
being use to find student loan defaulters.
Surveillance is driven by victimless-crime laws. And while
crime fighters should identify and punish perpetrators of known
crimes, “data-veillance” provides the tool to target someone the
government wishes to punish, and find something the person may
have done wrong.
“Especially today, when exceedingly complex regulation trips
up nearly everyone somehow, this is an inversion of the proper
way to fight crime,” writes Jim Harper, director of information
policy studies at the Cato Institute.
Moreover, “legislation enacted at a time of crisis could
convert…[databases] to surveillance purposes, when they are not
already being used in this way” (Policy Analysis 520, 8/4/04).
IT in the ER
An emergency physician reports that 6 months after
implementing IBEX, productivity is down almost 25%. It is hard to
find the basics in a ton of printed useless information. He often
has to do procedures alone because nurses are too busy inputting
data. The IBEX team insulted the older physicians, implying they
couldn’t understand computer technology. “I think he meant
pointing and clicking really fast since he looked too young to
have ever coded in Basic, PL-1, assembly language, or COBOL.”
What EMRs Miss
In the 1960s, Albert Mehrabian established that in spoken
communication, 7% of the meaning is in the words, 38% is
paralinguistic (the way the words are said), and 55% is in facial
expression. The whole clinical history can never be obtained from
the record. The practice of medicine can never be reduced to
terms that bureaucrats can understand and control. Attempts to do
so will fail; patients will be the losers and will eventually
rebel, just as they did against HMOs. We should not waste another
50 years in trial and error before recognizing what can’t be done
(Del Meyer, Medical Tuesday 8/25/05).
Madeleine Pelner Cosman, Ph.D., J.D., R.I.P.
AAPS is indebted to Madeleine Pelner Cosman for raising our
awareness about the criminalization of medicine, among many other
contributions. She was an indefatigable fighter for freedom and a
champion of free-market, patient-centered medicine. For many
years, she taught medical ethics. A Renaissance woman herself,
she founded the Institute for Medieval and Renaissance Studies at
CCNY. Dr. Cosman died March 2, 2006, of complications of
scleroderma. Memorials may be made to the Scleroderma Foundation
or the Wake Up America Foundation. A service celebrating her life
will be held in Escondido, CA, on April 8, 2006.
Medicare Premiums Taxed
Seniors who don’t file their own tax returns, or who use
TurboTax, may not realize that the premiums that are deducted
from their Social Security checks are added back to their benefit
in calculating their tax: see form SSA-1099.
Tracking to Enforce Compliance
Although Colorado suspended pneumococcal vaccines because
they couldn’t afford them, it still put $6.5 million into studies
to “develop and deploy a system for transporting clinical
information electronically between health care delivery systems
in Colorado” not counting a Robert Wood Johnson Foundation
grant. “Epidemiologic information” can be vacuumed out of school
records in Colorado.
In Georgia, all persons administering immunizations must
report to the electronic vaccine registry. Linda Gorman of the
Independence Institute argues that such registries are “the
camel’s nose under the tent for building a national health
information system architecture that is a vital building block
for managing nationalized health care and creating individual
citizen dossiers.”
The American Academy of Pediatrics (AAP) distributes a
“Refusal to Vaccinate” form stating: “I know that failure to
follow the recommendations about vaccination may endanger the
health or life of my child and others that my child might come in
contact with.” AAPS General Counsel Andrew Schlafly comments that
the AAP is apparently urging doctors to violate their Oath of
Hippocrates by trying to get parents to incriminate themselves.
The next step might be to take children into “protective” custody
to avoid such “endangerment.”
An AAP study showed that 39% of physicians dismiss families
who refuse all immunizations, and 28% dismiss those who decline
selected immunizations, stated Maureen Jones, FNP, of Century
Consulting in Portland, OR.
Will noncompliance become a reason to bar patients from
medical care in a future nationalized system?
Data Retention in Europe
The European Parliament rejected a proposal requiring
retention of communications data for 3 years, which would reveal
who is calling, faxing, emailing, and SMS-ing whom, what websites
they visit, and where they go with their mobile phones. It will
be implemented anyway by multi-national treaty. Estimated cost to
telephone and internet operators is 250 million euros. Critics
argue that the proposal violates the European Convention on Human
Rights (TCS 8/23/05).
AAPS Calendar
May 19/20, 2006. Dinner meeting and Board of Directors
meeting, Hilton Garden Inn, Chicago O’Hare Airport.
Sept 13-16, 2006. 63rd annual meeting, Phoenix, AZ.
AAPS Sues HHS over AHIC
In an action brought against the Department of Health and
Human Services and Secretary Leavitt, AAPS seeks to compel
defendants to comply with the Federal Advisory Committee Act
(FACA) in the operations of the American Health Information
Community (AHIC) and related health information technology (IT)
initiatives.
Membership of a FACA committee must be fairly balanced, and
its recommendations must not be inappropriately influenced by the
appointing authority or any special interest.
“Defendants expressly intend to use the federal government’s
`market power’…to impose or coerce Health IT on the medical
profession and patients as soon as possible,” states AAPS, “and
their initiative will impose financial burdens on AAPS’s
members.”
During the first AHIC meeting, Secretary Leavitt said “I
don’t think there is a person who sits at this table who has not
given speeches about the promise of health IT….” The National
Coordinator remarked on how “resonant” health IT is with people
in the U.S. That no one challenged him shows just how cloistered
AHIC members are from the medical profession and patients, who
consider the IT agenda frightening to the extent that patients
will lack control over access to their records.
The ostensible representative of practicing physicians is
Douglas Henley, Executive Director of the American Academy of
Family Physicians (AAFP), which is deeply committed to the health
IT agenda. The ostensible representative of patients and
consumers, Nancy Davenport-Ennis of the National Patient Advocate
Foundation, does not represent typical patients’ views,
especially on privacy.
“In sum, Defendants have selected a panel of `yes-
men’…already committed to Defendants’ agenda…[and] is
unwilling even to address publicly posed questions that challenge
Defendants’ agenda,” such as the privacy and openness questions
asked in public testimony by AAPS Public Affairs Counsel Kathryn
Serkes.
AHIC is forming “public-private partnerships” to operate
Contractual Panels outside the FACA oversight process; for
example, the Health IT Adoption Initiative.
AAPS also complains that HHS has undue influence over AHIC,
and is using non-FACA-compliant subcommittees to disseminate
propaganda supportive of its agenda, defying laws that prohibit
use of public funds for “publicity or propaganda.”
Although the Secretary has repeatedly stated his intention
to use the government’s “market power” to impose standards, the
antitrust laws appear not to authorize suing federal Defendants
directly. Nonetheless, legislation requiring consideration of the
“public interest” had been held to include consideration of
anticompetitive effects.
AAPS requests the U.S. District Court for the District of
Columbia to enjoin the use of any work product from AHIC or
subcommittees or Contractual Panels until all FACA violations are
cured, including lack of balance and undue influence by
Defendants.
The brief is posted at www.aapsonline.org. The
American Health Legal Foundation is supporting the litigation.
* * *
“The worship of Information and other forms of digitalia
is just as superstitious as any form of idolatry. But
misinformation is worse than no information, and disinformation
is worse still; and digitomania lends itself equally well to all
three.”
Marian Kester Coombs, Chronicles, June 2005
Read Your Hospital Reappointment Letter!
An AAPS member wisely declined to renew his hospital
privileges rather than sign a letter that read: “You agree that
if, in the Hospital’s judgment, you violate any
provision of the Medical Staff Bylaws or Code of Conduct policy,
you are deemed to have voluntarily resigned your medical staff
membership and privileges without any right to a fair hearing
or due process of any kind” [emphasis added].
The Code of Conduct is established unilaterally by the
hospital administration; the medical staff has no input.
Another tactic out of the Horty Springer playbook for
getting rid of physicians the hospital dislikes is conditional
reappointment, with the hospital in total control of the
conditions. Or the hospital can “lose” or never send a
reapplication form to the doctor. These tactics bypass the peer
review process altogether.
Once an investigation or adverse process is underway, a
doctor cannot resign without triggering requirements to report to
the licensure board and National Practitioner Data Bank.
Health Databases Invite Identity Theft
A patient in Portland, OR, has filed a class action suit
against Providence Home Services after computer backup disks with
data on 365,000 patients were stolen from an employee’s car. No
verified identity theft has occurred yet though people
identifying themselves as Providence employees have called some
patients to “verify” Social Security numbers.
In Redondo Beach, CA, however, “protected” health
information stolen by contract employees of Kaiser Permanente
South Bay Medical Center has been used to buy thousands of
dollars worth of goods and services on existing or fake new
credit cards (HIPAA Compliance Alert 2/13/06).
Identity theft is one of the largest, and growing, criminal
offenses in North America. It has been linked to existing
electronic health records in Canada. Increasing connectedness
will create still more opportunities for intrusion, including
“inter-silo intrusion,” in which information is passed from one
sector or silo (such as pharmacy records) to another (such as
financial records). Software developer Gordon Atherly warns
against “impatiently implemented, grand government schemes”
rather than privately developed, voluntarily adopted solutions
(Fraser Forum, October 2005).
The first step toward having all medical records accessible
online begins April 1 in Florida with some pharmacy records.
Breaches in the pharmacy system have already occurred (News-press.com 2/26/06).
Nuns’ Account Frozen; PATRIOT Act Blamed
The Holy Name Benedictine Monastery found it could not pay
its bills when its main bank account was frozen without
explanation. It turned out that an 80-year-old nun who was a
signatory to the account did not have her Social Security number
and photo id on file. The PATRIOT Act requires such information
for new, but not existing accounts. Legal experts say there is
confusion about what the antiterrorism laws actually do require.
“If it happened to us, it can happen to anybody,” said
Sister Jean Abbott, the monastery’s business manager. “I think
that people need to know that nobody is safe from, in some cases,
really ridiculous scrutiny” (Tampa Tribune 2/8/06).
Correspondence
Automatic Denials. Medicare carriers using the Multi-
Carrier System (MCS), a computer system for claims processing,
deny resubmissions automatically. If a physician makes a
typographic error in an ICD-9CM diagnosis code, and the claim is
therefore denied for lack of medical necessity, it is no longer
possible to correct the error and resubmit. The only way a
physician can be paid is through the expensive, burdensome, and
lengthy appeals process. If the amount in dispute is too small to
qualify for the appeal, Medicare can legally pay the physician
nothing. This high standard for claims accuracy comes from the
same bureaucracy that answers questions wrongly 96% of the time!
Lawrence R. Huntoon, M.D., Ph.D., Lake View, NY
“Big Ideas.” The usual (hardly new) ideas for “saving
our health care system,” as propounded in Physicians
Practice, February 2006, should be entitled “We’re Smarter
Than You: How Arrogance and Force Can Save U.S. Health Care.” To
control costs, spend more federal money on programs and P4P.
Force people to buy insurance, unless they can’t, and then force
others to buy it for them. Rather than admit that our big bloated
safety net is a failure, create another one without changing any
of the assumptions that led to the initial fault. More spending,
more mandates, more collective guilt.
Patrick Conrad, M.D., Niceville, FL
Results of Mandates. As soon as you make anything
mandatory, government has control of pricing and product
structure in that market. You have a whole new class of
lawbreakers, huge data demands to enable enforcement, fertile new
ground for a new government plantation as people demand subsidies
for those who can’t afford the mandatory product, and continuous
redefinition of it as various interest groups lobby for its
expansion.
Linda Gorman, Independence Institute, Golden, CO
Rationing by Waiting. The process is gradual. Doctor
time per visit decreases gradually, and delays increase until the
wait is unacceptable and there are no quick fixes. But it seems
less painful to employees that an sudden switch to a Health
Savings Account and they can’t blame the employer. It’s the
greedy doctors, or the greedy insurance executives, or “the
economy.”
Robert S. Berry, M.D., Greeneville, TN
Getting It Backward. At a time when the rest of the
economy and the world are decentralizing, hospitals are
consolidating. I ask CFOs why, and they say information systems
make them do that. Wrong. Information systems enable
decentralization.
Greg Scandlen, Hagerstown, MD
Real Cost Savings. Computerized health records and
billing may offer little in the way of savings. However, there is
tremendous opportunity for savings in entirely eliminating
insurance for low-cost services and simply paying cash, just as
we pay attorneys, plumbers, and others. Billing costs vanish; no
need for legions of staff to process claims. Thousands of doctors
have moved to accepting only cash, cutting bills by 25% to 50%.
Using insurance only for expensive services could knock several
hundred billion dollars off national spending.
Sean Parnell, Heartland Institute, Chicago, IL
Buying Back the Hospitals. About $30,000 could buy a
time share allowing 2 to 3 days in the hospital every year,
transferable to other communities with similar arrangements. If
80,000 people bought a hospital, it would have $2.4 billion in
its coffers, and the owners could afford to be generous to their
neighbors. Funds could be managed by a local board with full
transparency. Young families could own a timeshare that would
cover every delivery. Only the doctor would need to be paid. We
would not need medical insurance; we could have well-funded
Health Savings Accounts instead.
Alieta Eck, M.D., Somerset, NJ
The “Blue Roof” Program. The Corps of Engineers had
$330 million to pay contractors $175 a square to nail cheap blue
tarps on hurricane-damaged roofs. Pre-hurricane prices for new
roofs with three-tab shingles were about $100 a square. Post-
hurricane prices began at $185 (with roofers tripping over each
other), but then shot up to more than $220. Why tear off the old
roof, apply new felt and shingles, and haul away debris, when you
can earn as much in a couple hours nailing on a tarp? Also, there
was third-party payment. To keep costs down, government should
get out of the temporary roofing business and out of the medical
insurance business.
Joseph Lee Pugh, Diamondhead, MS
Lowered Expectations. Not surprisingly, the AMA is
collaborating with the effort to wipe out the art of medicine and
leave only a set of standards to which all the regimented robot
physicians (or better, physician extenders) will be held. No
deviation allowed even if (or especially if) it benefits the
patient. Patients have gotten used to physician extenders at
grocery store “RediClinics.” Being canny businessmen, the
supermarkets accept no insurance! The results of squeezing
physicians out of the primary-care arena should prove
interesting. Of course, everybody still wants us to treat the
complex multi-chronic-disease patient without adequate pay!
Everest A. “Tad” Whited, M.D., Ph.D., Pflugerville, TX
Legislative Alert
The Assault on Freedom,
Federalism, and Privacy
The “right to privacy” is oft on the lips of federal
lawmakers. They usually mean abortion, but most other people mean
something more basic protection against snooping.
There always have been busybody neighbors, dumpster-diving
thieves, and intrusive journalists, but protecting personal
privacy has become even more important in the computer age.
Threats come from all quarters. The most obvious known dangers
result from crooks who go “phishing” for personal financial
information online or who break into personal computers or
corporate intranet systems. However, sometimes the gravest threat
to privacy and our liberties comes not from thieves but from
government officials who claimed that their “need to know” trumps
the individual right to be left alone.
Few issues are more sensitive to most people than their
health. For many reasons, ranging from fear of embarrassing
disclosures to determination not to unsettle loved ones, patients
desire to keep their medical information private.
While the development of electronic medical record-keeping
has been a boon in many ways, electronic data, especially online,
is easily shared and vulnerable to abuse by the curious and the
malicious alike. Medical data is especially problematic. There is
rarely a valid reason for banks to transmit account details to
other companies or the government; however, medical treatment
routinely crosses the boundaries of professional offices. With
electronic data, not only can more people see your
medical information, but more people believe they must
see it.
Most Americans recognize the danger. According to a recent
survey conducted by Forrester Research for the California
HealthCare Foundation, two-thirds of respondents were concerned
about the confidentiality of their medical records; nearly three-
fourths of minorities were worried. Roughly one person in four
cited at least one incident in which they believed their privacy
had been compromised. More than seven in ten worried that
electronic record-keeping made unauthorized access more likely.
Strong legal protections are needed for medical privacy.
Moreover, patients must be able to contract privately with their
physicians to protect their privacy independent of or in
conjunction with state privacy laws. This means that patients
must be in control of the dissemination of their health
information. They must be allowed to decide who gets to see what
data, and when. Fortunately, despite the federal government’s
assault on medical privacy, many states have enacted patients’
rights into law. Even when medical offices press for patient
approval of the transfer of information (as demanded by insurers,
for instance), the overall presumption should be shifted to
nondisclosure unless otherwise specified by the patient or legal
guardian.
Beyond repealing the HIPAA “Privacy Rule” really a
disclosure rule, Congress must be prevented from further
nationalizing the laws governing medical information privacy in
the name of encouraging electronic data transmission.
Although online information-sharing can yield undoubted
benefits, some medical offices have been slow to automate this
aspect of their practices. But such behavior does not represent a
crisis requiring federal intervention. Actually, this behavior is
in many cases a response to previous federal interventions via
the HIPAA Privacy Rule. Many doctors have decided not to go
electronic, in order to protect medical privacy as well as
they can.
A National Infrastructure: H.R. 4157
Congress and the President are now threatening to unsettle
further the delicate balance between protection of and access to
patient information, which is already weighted against protection
and toward non-consensual disclosure. About two years ago,
President George W. Bush issued an executive order creating the
National Health Information Technology Coordinator. This person’s
work, intoned the President, “shall be consistent with a vision
of developing a nationwide interoperable health information
technology infrastructure.”
The expressed goals are reasonable enough: better medical
care, lower costs, improved coordination, and greater
competition. All the while, the system is to ensure “that
patients’ individually identifiable health information is secure
and protected.” However, any national effort at standardization
risks undermining state laws, which have offered the only legal
protection for patient privacy. Luckily, the impact of this
effort has been limited. Without new legislative authority,
there is little that a federal “coordinator” can do.
Of much greater concern are congressional proposals to give
federal officials such authority. For instance, H.R. 4157, the
Health Information Technology Promotion Act of 2005, uses the
language of patient confidentiality. But it would
simultaneously lead toward the creation of a national medical
database while weakening patient control over information
disclosure.
Establishing a national system is the key goal. Rep. Nancy
Johnson (R-CT) explained: “This legislation will make sure the
national health IT coordinator’s post is a permanent one, and it
will overcome some of the key obstacles that have slowed our
progress toward adoption of a national, interoperable electronic
system.”
H.R. 4157 establishes a permanent bureaucracy, an
Office of the National Coordinator for Health Information
Technology. This is the statutory authority lacking in the
President’s executive order. History suggests that such an
office, once established, will never be eliminated. The National
Coordinator in turn is to create “a nationwide interoperable
health information technology infrastructure.” But that’s not
all. The legislation continues: “The National Coordinator shall
maintain, direct, and oversee the continuous improvement of a
strategic plan to guide the nationwide implementation of
interoperable health information technology in both the public
and private health care systems.” Indeed, building a
federalized information infrastructure will not be limited to the
Department of Health and Human Services. Rather, the National
Coordinator is to coordinate HHS programs “with those of relevant
executive branch agencies and departments…to create a national
interoperable health information system.”
Additionally, the legislation would attempt to coopt private
entities, establishing a public-private partnership: HHS, “in
consultation with entities involved in the area of health
information technology, shall develop a strategic plan related to
the need for coordination in such area.”
The necessity for such a system is not obvious. A nationwide
system can develop informally and spontaneously, as essentially
has been happening since the development of the computer.
Thousands of medical professionals across America already are
adjusting their medical records and practices in their own way
and at their own pace. And most doctors, labs, and hospital
already cooperate effectively to share information in treating
patients.
While the evolution of the market has been a bit confusing
and complicated, it has enhanced the freedom of patients and
physicians alike and allowed all participants to learn from their
mistakes. Federal officials who believe that they can “do better”
ignore the routine inefficiency and failure that follows attempts
to short-circuit market experimentation through centralized
government control.
Attempting to force the health information process into a
national mold at a speed desired by Congress risks several
adverse consequences.
First, information could more easily be accessed by
unauthorized people and, thanks to the Privacy Rule under HIPAA,
the list of authorized persons is quite long and disturbing. Most
of us shudder when we read of thousands of credit card accounts
made vulnerable by a single electronic bank break-in.
Federalizing the medical information process could make
millions of Americans vulnerable to systematic misuse of “a
nationwide interoperable health information technology
infrastructure.”
Second, this system would encourage creation of a
national medical ID number or card. The intent might be for
good rather than for ill, but that’s how restrictions on liberty
almost always are first advanced. Such a system might yield
greater efficiency, even though the preliminary data suggests
otherwise, but would jeopardize freedom from government snooping.
Individual medical professionals and offices might abuse their
positions, but only the federal government can put us all at
risk.
Third, national information standards could ultimately
transform patient care and interfere with treatment
decisions. For instance, H.R. 4157 explains that the new
infrastructure is to advance delivery of “appropriate, evidence-
based health care services” and reduce “inappropriate care.”
How will “appropriate care” be defined? An activist
bureaucracy determined to change medical outcomes could use its
power over medical information to promote or even mandate certain
treatment practices and outcomes.
This is hardly an ivory-tower concern. In many cases
Americans are governed more directly through rules issued by
federal agencies than through laws enacted by Congress. And in
more than a few areas those rules have moved far beyond the
original intent of the authorizing legislation.
That federal officials have a multifaceted health agenda
has long been obvious: the campaign against smoking is long
developed, while that against obesity is just beginning. Nagging
about nutrition and exercise now is commonplace. However well-
intentioned such efforts might be, Americans should be wary
before they allow government to put the force of law behind
similar initiatives. People concerned about their privacy should
not allow their legislators to make broad grants of authority to
any bureaucracy in any area, especially one as important as their
own medical care.
Finally, passage of H.R. 4157 would breach the final privacy
redoubt for many Americans: protective state rules. The
proposed bill could preempt any state law “for use in the
electronic creation, maintenance, or exchange of health
information.” In some policy areas Congress sets a minimum
standard, but allows states to make more protective standards.
Not here, for medical privacy, however. The legislation gives a
nod to confidentiality and privacy concerns, calling for a study
of state and federal laws governing information disclosures. But
the bill emphasizes “the need for timely and efficient exchanges
of health information to improve quality of care and ensure the
availability of health information necessary to make medical
decisions at the location in which the medical care involved is
provided.”
Since those exchanges now routinely occur naturally and
without federal interference, one wonders at the real agenda
behind H.R. 4157. Many medical operations have been lobbying for
years to weaken (or even eliminate) state rules governing patient
consent for the release of medical records. This legislation
looks like yet another assault on privacy.
How to Protect Freedom and Privacy
Opposing H.R. 4157 doesn’t mean opposing information sharing
in principle or even federal efforts to eliminate barriers to
private coordination. But any “national infrastructure” should
meet three basic conditions:
1. It should be market-based. That is, developments
should reflect natural trends among patients and professionals.
Rather than attempting to impose any particular system, a federal
“coordinator” would advise public officials on policy reforms
needed to eliminate unnecessary legal or regulatory restrictions
on improved information-sharing, support and promote medical
ethics, and truly protect medical privacy. This should include
repealing the privacy rule under HIPAA and removing any and all
barriers to private contracting to control disclosures.
2. It should respect rather than override state privacy
protection laws. Ultimately, the decision on sharing medical
records should rest with the patient. States may properly choose
somewhat different levels of protection and enforcement. There is
no justification for the national government to eliminate such
differences, especially by reducing privacy guarantees.
3. It should rely on “opt in” rather than “opt out” or
especially “no choice.” That is, patients, doctors, nurses,
and others should be left to decide whether or not to cooperate
with federal efforts. The benefit of uniformity does not override
the importance of liberty. Many people will be naturally
reluctant to risk their medical privacy even when national
officials appear to be well-intentioned and national efforts look
well-designed. But respecting such suspicions is the essence of a
free society. Public officials always have seemingly “good”
reasons for violating people’s liberty. Attempts to override
patient privacy rights are no different.
If the right to privacy means anything, it should ensure
that Americans control access to their health information. The
benefits of computerizing and sharing information are real. But
so are people’s fears that simplified access to those newly
convenient records will be abused. Congress will fail in its most
basic duty to protect people’s personal liberties if it approves
H.R. 4157.
Michael D. Ostrolenk is a member of the AAPS government
affairs team in Washington, D.C.
Dr. Moffit’s column will return next month.
