Health Freedom Watch
to Direct Your Health-Care Choices?
By Sue Blevins
We're hearing a lot lately about the
trend toward "consumer-directed health care" and the need for
strengthening the "ownership society" in
. These ideas couldn't be emphasized at a more important
time. Here's why:
Payer Controls Choices
Currently, most Americans' health-care
choices are controlled by employers and government. Private businesses pay for approximately 27 percent
of citizens' health-care expenditures while government pays
for 35 percent (18 percent federal and 17 percent state and
local). It's well known
that he who pays the piper calls the tune. And when it comes to health care, employers and
government are making important insurance decisions for the
majority of Americans-deciding which treatments and providers
are approved and which are not.
So the sooner consumers become empowered payers of health
care, the sooner they will be calling the tunes.
Ownership of Genetic and Other Health
David Vise, [co-]author of The Google Story, reports that Google.com is working with Craig Venter
(of human genome-mapping fame) to enable people to search through
their own genes. This
forthcoming computerization of genetic data raises important
ethical questions: who owns your genetic information, and where
will that information be stored?
Clearly, if employers and government are paying for genetic-related
tests and treatments, they will be privy to information that
some Americans may wish to keep private. One way to enhance health privacy is for consumers
to pay directly for these tests and treatments, as well as any
other health care.
Forthcoming Trend in "Personalized
Another trend that we're hearing about
is "personalized medicine," in which pharmaceutical companies
use genetics to tailor treatments to the individual. A senior executive with GlaxoSmithKline told The Independent (British
newspaper) in 2003 that "the vast majority of [prescription]
drugs-more than 90 percent-only work in 30 or 50 percent of
the people." At the
same time, most-if not all-prescription-drug labels list a variety
of side-effects, ranging from minor ones to serious consequences
requiring medical intervention and hospitalization. Thus the trend toward finding more effective treatments
with reduced side-effects.
With these trends in health care,
each of us should be asking:
Who will decide what type of health insurance and treatments
I can purchase?
If we continue with employer- and
government-directed health care, we can be sure our choices
will remain limited. But
with a move toward consumer-directed health care, individuals
will be able to exercise their freedom of conscience in health
care-an area in which many people don't want the collective
masses-including bureaucrats-making personal health-care decisions
- "Gene Search," The Business 2.0 Blog, accessed
online December 5, 2005: (http://business2.blogs.com/business2blog/
- "Medicine Gets Personalised," Royal Society of Chemistry,
July 2005: (http://www.rsc.org/chemistryworld/Issues/2005/July/Medicine_personalised.asp).
- "Glaxo Chief: Our Drugs Do Not Work on Most Patients," The
Independent, December 8, 2003: (http://news.independent.co.uk/world/science_technology/article81625.ece)
- Center for Medicare & Medicaid Services, "Table 1: Expenditures
for Health Services and Supplies, by Type of Payer: United States,
Selected Calendar Years 1987-2000": (http://www.cms.hhs.gov/statistics/burden-of-health-care-costs/table01.asp) [link was active on December 9, 2005].
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Survey Shows Most Americans Are Concerned
about Health Privacy
Respondents Feel More Secure With Paper Records than Electronic
A recent national survey conducted
by Forrester Research for the California HealthCare Foundation
found that 67 percent of respondents are concerned about the
confidentiality of their medical records, although the same
percentage is "aware of federal laws that protect the privacy
and confidentiality" of those records. Thus even though a majority of Americans
are aware of the federal medical-privacy rule, most don't believe
it accomplishes what it promises.
This should not surprise those who
understand that true health privacy means that individuals decide
who can see their health information. And since the medical-privacy rule stripped
citizens of that decision-making power and gave it to the federal
government and health-care industry, it's not surprising that
citizens remain uneasy about their privacy.
Here are other findings of interest
to privacy advocates:
- 63 percent
of those who have not
been diagnosed with a disease are concerned about their privacy.
is a bigger issue for minorities, with 73 percent expressing
- Nearly one out of four respondents (24 percent)
is aware of a specific incident in which privacy was compromised. The percentage was higher
among those with a college degree (29 percent) than among those
without a degree (21 percent).
- Concerns about employer use of medical-claims
information has increased significantly since 1999. In that year, when asked, "How concerned
are you that claims information you provide an insurer might
be seen by an employer and used to limit job opportunities?"
36 percent responded they were concerned (the survey report
aggregates "very concerned" and "somewhat concerned"). In 2005, the percent
of those concerned (very and somewhat) increased to 52 percent.
- Only 37 percent are willing to share health
information with employers; 20 percent are willing to share
it with government agencies.
- 98 percent of respondents are willing to
share their health information with the doctors they use most
often; but only 30 percent say they would share their records
with doctors not
involved with their care.
What's more, nearly one out of eight
(13 percent) report having engaged in one or more of the following
- Asked a doctor not to record a health problem, or record a less-serious/embarrassing
- Gone to another doctor to avoid telling
their regular MD about a health condition.
- Personally paid for a test, procedure, or
counseling rather than submit a claim, out of concern someone
else would access the information.
- Decided not to be tested, out of concern
that others might find out the results.
Finally, when asked whether they think
medical records are more secure in paper or electronic form,
respondents reported feeling better about paper: 66 percent
believe paper records are secure, while 58 percent believe electronic
records are secure. Moreover,
while 93 percent believe that computer-based systems give doctors
and nurses quicker and easier access to patient information,
72 percent believe that such systems increase unauthorized access.
Source: The survey and an executive summary can be
downloaded from the California Healthcare Foundation's website:
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"Wired for Health Care Quality Act"
Patients Cannot Control Data Use
Legislation that allows for the electronic
transfer of medical records is "deeply flawed" because patients
do not have ultimate control over who can see and use their
medical records, said Dr. Deborah Peel, MD, president of the
Patient Privacy Rights Foundation.
The U.S. Senate [on November 18] passed
the "Wired for Health Care Quality Act," [S. 1418] which promotes
the adoption of a nationwide interoperable system for the electronic
transfer of medical records via a network of healthcare databases.
Peel said, "This bill is deeply flawed
because it will allow employers, hospitals, insurance companies,
accountants, pharmacies, pharmacy benefits managers, financial
service companies, data warehouses, medical transcribers, and
other health-related businesses to have electronic access to
medical records without the patient's permission and even over
"A key component of patient privacy
is the ability to control who sees and uses your most private,
sensitive healthcare information," Peel said.
"If Americans read the fine print
in the 'Privacy Notices' they sign at their doctor's offices,
they will learn they have no control over who sees their medical
records," Peel said. "Most
uses of their medical records have absolutely nothing to do
with their health-care treatment, preventing illness, or insurance
Without the "right of consent" (eliminated
by amendments to HIPAA in 2003), patients do not have the right
to grant permission for their records to be shared. Now, with the implementation of a nationwide interoperable
health-care network, these records will be shared with hundreds
of thousands of corporations and millions of their employees.
- Patients cannot "opt out" of this system
- Patients cannot segment sensitive records
- Patients cannot keep their [self-insured]
employers from seeing their records
- Patients cannot control who sees and uses
- Audit trails of these innumerable disclosures
are not required [for most purposes]
In addition to Patient Privacy Rights'
efforts, thirty mental health practitioner and patient groups
signed letters urging lawmakers to include patients' rights
to control access to personal health information in any health
information technology bill. These groups include the American Academy of Child and Adolescent
Psychiatry, American Association of Practicing Psychiatrists,
the American Nurses Association, American Occupational Therapy
Association, and the National Association of Social Workers.
S. 1418 passed without including these
fundamental patient's rights to privacy, and the Senate referred
this bill to the House Energy and Commerce Committee for consideration.
"We're extremely disappointed," Peel
said. "We believe that
21st century technology could actually be used to protect patient
privacy if patient's rights are built into these laws. Opponents
of the bill were told that amendments addressed data 'security',
but the bill did not address 'privacy'."
Action in Congress now moves to the
HIT bill in the House, the "Health Information Technology Promotion
Act" (H.R. 4157), introduced by U.S. Representative Nancy Johnson. H.R. 4157 sets up a process
designed to preempt stronger state privacy laws and make the
HIPAA Privacy Rule the national standard.
Source: Patient Privacy Rights press release, November 18, 2005.
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Health Freedom Watch is published by the Insitute for Health Freedom. Editor: Sue Blevins; Assistant Editor: Deborah Grady. Copyright 2005 Institute for Health Freedom.