[Med-privacy] Press Release: Coalition of 47 Groups Urges Congress to Protect Privacy

[peter marshall]

47 State & National Organizations, Health IT Companies Join Forces to=20
Demand Consumers Regain Control of their Personal Health Records.

The Tipping Point for Health IT is not about funding or even=20
bureaucracy:=A0 it=92s about PATIENTS trusting that their most personal=20=

information will be protected.

Washington, DC --The bi-partisan Coalition for Patient Privacy is back=20=

on the steps of the Capitol urging Congress to restore basic privacy=20
protections; only this year they have doubled their membership and=20
included health IT corporations, big and small.=A0 As everyone races to=20=

build electronic health records systems without ironclad federal=20
privacy protections, the ACLU, AIDS Action, the American Association=20
for People with Disabilities, American Conservative Union, Family=20
Research Council, Patient Privacy Rights, Consumer Action, Microsoft=20
Corp., Inc. and many more ask Congress to step to the plate and set=20
national privacy standards.=A0 Three-fourths of the American public want=20=

Congress, not unelected bureaucrats or the whims of the market, to=20
ensure our right to health privacy is protected in electronic systems=20
and yet we still have no Federal statutory right to health privacy.=A0


The letter to Congress will be revealed at a press conference Thursday,=20=

October 18, 2007 at 10:00 a.m. EST in the Rayburn House Office=20
Building, Room 2456.=A0 =93Today the Coalition for Patient=20
Privacy=A0has=A0transformed the debate on privacy and health IT: a major=20=

multinational technology corporation, Microsoft,=A0has joined=A0the=20
American=A0people=A0in urging Congress to=A0build ironclad privacy=20
protections into electronic health systems up front=94 said Dr. Deborah=20=

Peel, Founder of Patient Privacy Rights. =A0=93The=A0false=20
arguments=A0that=A0consumer control of access to health information is =
too=20
expensive or=A0will obstruct the flow of health information have been=20
laid to rest. Privacy--every American's=A0right to control access to=20
personal health information---is the key to building a successful=20
electronic health=A0system.=94

Congressman Edward J. Markey will join the Coalition as they advocate=20
for strong privacy protections at the press conference. =93The great=20
Irish poet William Butler Yeats once wisely observed, =91In dreams =
begins=20
responsibility.=92 The dream of a nationwide, seamless, effective health=20=

IT system is enticing.=A0 Let us hope that we can realize this dream.=A0=20=

But today Congress has a responsibility to ensure that patients=92=20
personal medical secrets are not put at risk in the process. If we fail=20=

to build in tough privacy principles and strict safeguards, we run the=20=

risk that the dream of health IT will turn into a nightmare.=A0=A0 I =
look=20
forward to working with my colleagues in Congress, and privacy leaders=20=

such as Dr. Peel, to craft legislation that both promotes the use of=20
health IT while also preserving patient privacy,=94 said Representative=20=

Ed Markey (D-MA), a Co-Chairman of the House Privacy Caucus.

Frank Torres, Director of Consumer Affairs, Microsoft added: =93Microsoft=20=

joins the Coalition for Patient Privacy in urging Congress to include=20
basic privacy protections for electronic health records in any health=20
IT bill it considers.=A0 Such protections are needed to ensure the=20
creation of a health IT eco-system that consumers can trust.=A0 We can=20=

empower people to lead healthy lives, while putting them at the center=20=

and in control of their health information.=94

The letter is being released at a crucial time as the Senate and House=20=

are preparing to consider legislation that will establish an Electronic=20=

Health Information Network.=A0 The Wired for Health Care Quality Act (S.=20=

1693) pending in the Senate provides for a national electronic health=20
information system and does not recognize or protect Americans' right=20
to health privacy.=A0 In fact, the bill authorizes the Secretary of=20
Health and Human Services to issue standards eliminating the=20
individual's right to health privacy without even providing an=20
opportunity for public comment.

"Medical care is one of the most intimate, personal services in every=20
individual's life. It is an art form requiring complete honesty and=20
absolute confidence in the good intentions and discretion of the=20
attending physician.=A0 Infringements on that relationship are among the=20=

most destructive things the state can possibly do to its citizens,=94=20
said William Westmiller, National Chairman, Republican Liberty Caucus.=A0=20=

=93Every patient has a right to absolute privacy and totally =
confidential=20
treatment, just as fundamental as the right to their own life,"=20
Westmiller said.

Despite the intent of the Health Insurance Portability and=20
Accountability Act (HIPAA) and its =93Privacy Rule=94, the current=20
regulations leave all Americans=92 personal health information =
completely=20
vulnerable and exposed. State laws, common laws and the Constitution=20
are there for protection.=A0 Yet the HIPAA =93Privacy Rule=94 is really =
a=20
=93Disclosure Rule=94 that authorizes more than 4 million entities to =
use=20
and disclose an individual=92s health information.=A0 This disclosure is=20=

without the individual=92s consent and over their objections.=A0 =93All=20=

Americans have a right to privacy, and that right doesn=92t stop at the=20=

doctor=92s office door. Medical privacy is a mystery to most Americans.=20=

After signing their HIPAA forms, most Americans don=92t think about what=20=

happens to their information, and worse, most would be shocked to know=20=

that their most personal information is not as safe as they would hope.=20=

Congress must ensure that Americans=92 medical information will not be=20=

used without their consent and that their privacy rights will not be=20
trampled, whether their health information is kept on paper or=20
electronically=94 said Michael W. Macleod-Ball, American Civil Liberties=20=

Chief Legislative and Policy Counsel.

"If Congress is going to force health IT on the American people with=20
their foolish mandates, subsidies and grants, then at the very least=20
there needs to be privacy protections included=A0 as well as the ability=20=

for sane citizens to opt out," added the National Director for the=20
Liberty Coalition, Michael Ostrolenk.=A0

As we move toward one of the most important elections in the nation's=20
history, all Americans should ask political candidates a simple=20
question:=A0 =91Do you believe we as Americans have a right to health=20
information privacy, and if so, do you believe that right should be=20
recognized and protected in any national electronic health information=20=

system?=92=A0 =93This is not a partisan issue: the right to health=20
information privacy is a fundamental right of all Americans recognized=20=

in Constitutional law, standards for the ethical practice of medicine=20
and the physician-patient privilege. The voters should know where the=20
candidates stand on this critical issue," said Jim Pyles,=20
Principal=A0in=A0health=A0law firm of Powers, Pyles, Sutter & Verville, =
P.=20
C..

The Coalition for Patient Privacy first formed in 2006 and represents=20
millions of Americans.=A0 Dr. Peel leads the Coalition and is the =
founder=20
of Patient Privacy Rights, a national consumer health privacy watchdog=20=

organization based in Austin, TX.=A0

=A0

Background Material

The elimination of consent for health records

2006 activity by the Coalition for Patient Privacy

The millions of individuals and entities who legally have rights to=20
your personal information

[....]=