New Patient Privacy Poll

Should anyone other than you control your personal health information in electronic health systems? Across the board, Americans resoundingly say “NO.”

Patient Privacy Rights worked with Zogby International to conduct an online survey of over 2000 adults to identify their views on privacy, access to health information, and health information technology (health IT). The results were overwhelmingly in favor of individual choice and control over personal health information.

View the Privacy Poll Results
View the Press Release
Listen to the Press Teleconference here

News Coverage
Healthcare IT News: Poll: Huge majorities want control over health info
Forbes: Americans Want to Control Their Health Information
Fierce Health IT: Majority of Americans want personal control of health information
Modern Healthcare: Privacy desires ignored

Americans are not just concerned about corporations snooping in their medicine cabinets, but also about researchers, nosy employees, and people with malicious intent, such as an ex-spouse or abusive partner.

Over ninety percent of Americans want to be able to decide which individual people can see and use their health information. This reflects a strong desire for very specific, detailed control.

Note: A sampling of Zogby International’s online panel, which is representative of the adult population of the US, was invited to participate. Slight weights were added to region, party, age, race, religion, gender,
education to more accurately reflect the population. The margin of error is +/- 2.2 percentage points.

UK Handing off their health records?

Federal Computer Week: U.K. mulls handing off national health records to Microsoft, Google

It will be interesting to see which one the UK chooses. Microsoft joined the bipartisan Coalition for Patient Privacy to urge Congress to restore consumer control over PHI in 2007. Google has not.

MS signed Coalition letters in 2007 and 2009, and agreed to support the Coalition’s tough privacy principles and health privacy rights in electronic systems. HealthVault was built to adhere to the Coalition’s stringent privacy principles. Open, public promises by major corporations are taken very seriously by federal regulatory agencies and consumer advocates.

The promises by the technology corporations that joined the Coalition are a rebuke to other HIT vendors and the data mining industry that will do anything to get their hands on PHI for all sorts of uses that patients would never agree to.

Today, the clearest sign of serious corporate commitment to health privacy rights is joining the Coalition for Patient Privacy and standing with consumers to build an ethical, legal HIT system—the only kind that will be trusted and succeed.

UK Handing off their health records?

Federal Computer Week:U.K. mulls handing off national health records to Microsoft, Google

It will be interesting to see which one the UK chooses. Microsoft joined the bipartisan Coalition for Patient Privacy to urge Congress to restore consumer control over PHI in 2007. Google has not.
MS signed Coalition letters in 2007 and 2009, and agreed to support the Coalition’s tough privacy principles and health privacy rights in electronic systems. HealthVault was built to adhere to the Coalition’s stringent privacy principles. Open, public promises by major corporations are taken very seriously by federal regulatory agencies and consumer advocates.

The promises by the technology corporations that joined the Coalition are a rebuke to other HIT vendors and the data mining industry that will do anything to get their hands on PHI for all sorts of uses that patients would never agree to.

Today, the clearest sign of serious corporate commitment to health privacy rights is joining the Coalition for Patient Privacy and standing with consumers to build an ethical, legal HIT system—the only kind that will be trusted and succeed.

But privacy is ALREADY gone!

Refer to Wall Street Journal article: Is Government Health Care Constitutional?

The authors fear that Americans’ health privacy rights will be eliminated by health reform if a proposed “public plan” evolves into “single payer”.

They are too late, there is no privacy (the right to control personal information) in the US electronic health system —EXCEPT for the strong new rights Congress added to the stimulus bill: the ban on sales of PHI, the right to segment sensitive records, and the right to limit disclosure of PHI to health plans for payment or HCO if treatment is paid for out-of-pocket.

Our strong existing ethical and legal privacy rights (a powerful national consensus arrived at over 200+ years) are being totally ignored by federal and state government and industry.

The authors clearly don’t know that we have no health privacy today or that privacy advocates in the bipartisan Coalition for Patient Privacy (representing 10 million Americans) work to restore those rights.

In 2002, amendments to the HIPAA regulations granted new rights to corporations and government to use ALL health data without informed consent for purposes no one would ever agree to AND eliminated Americans’ rights to give consent before our data is used. See:HIPAA_Intent_Vs_Reality . In 1999, the HIPAA statute granted law enforcement unfettered access to all electronic health records without informed consent or any judicial process.

Both Democratic and Republican Administrations and Congress have contributed to eliminating patients’ rights to control personal health information. The ONC-Coordinated Federal Health IT Strategic Plan: 2008-2012, requires all EHRs to be “wired” for data mining and requires every citizen to have an EHR by 2014.
See:HITStrategicPlan08.pdf

The Federal Strategic Plan grants “back door” access to the nation’s electronic records to government agencies; to the for-profit research industry for P4P, QI, population health, genetic research (personalized medicine), etc; and to the insurance industry to detect fraud (this is one of the most offensive and discriminatory measures planned–the last people patients want to have MORE access to sensitive health records are insurers and employers).

Key Quotes:

• The Supreme Court created the right to privacy in the 1960s

• the justices posited a constitutionally mandated zone of personal privacy that must remain free of government regulation, except in the most exceptional circumstances.

• Taking key decisions away from patient and physician, or otherwise limiting their available choices, will render any new system constitutionally vulnerable.

• if over time, as many critics fear, a “public option” health insurance plan turns into what amounts to a single-payer system, the constitutional issues regarding treatment and reimbursement decisions will be manifold. The same will be true of a quasi-private system where the government claims a large role in defining acceptable health-insurance coverage and treatments. There will be all sorts of “undue burdens” on the rights of patients to receive the care they may want. Then the litigation will begin.

• In crafting the law, however, its White House and congressional sponsors must keep privacy — that near absolute right to personal autonomy they have so often praised and promoted — squarely before them. The only thing that is certain today is that the courts, and not Congress, will have the last word.

The authors tilt at the wrong windmill –not realizing they are too late: the privacy for health data in electronic systems is already GONE. We hope they will join us and work to RESTORE Americans’ longstanding ethical and legal rights to health privacy–regardless of a “public plan” or whether it turns into “single payer”.