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”.

Data-mining: Australia Just Calls It Something Else

In Australia, the data mining industry pays doctors to sell patients’ prescription records. In the US they pay pharmacies, hospitals, and PBMs. See Article.

A complaint to the Australian Privacy Commissioner was dismissed because the data miners claimed that patients and doctors were “de-identified”. But it is very difficult to fully de-identify personal health data so that re-identification is impossible. If true, the industry should have offered proof that their methods actually work and that the data cannot be re-identified.

As in the US, the theft and sale of personal prescription records is rationalized with claims that it can be used to “provide valuable insight into healthcare trends– including the spread of infectious diseases”. The word that describes using data to provide “valuable insights” is “research”. It happens to be both illegal and unethical to do research without informed consent.

First HIT Policy Committee Meeting on Stripping Privacy Away?

No surprise the new HIT Policy committee is gearing up to eliminate privacy, i.e. patient control over personal health information, using the excuse that the entire nation’s records are needed for biosurveillance and research without informed consent. See the quotes from Drs Calman and Clark. The title of the article says it all: “Committee studies public health, research“.

The committee is dominated by industry appointees who will make sure the policies they come up with grant unfettered government and industry access to Americans’ most sensitive personal data, from prescriptions to DNA.

What they don’t get is they will lose the public’s support and trust if they build a system where everyone’s health records can be data mined for any research purpose. A Westin/Harris IOM poll found only 1% of the public would allow researchers unfettered access to their electronic medical records. The government and the research community are completely at odds with the public’s rights to health privacy.

The reality is millions of Americans already refuse to participate in healthcare systems that harm them because they have no control over their medical records.

HHS noted in the Preamble to the HIPAA Privacy Rule that 600,000 Americans/year avoid early diagnosis and treatment for cancer because treatment records are not private private. Two million people/year with mental illness avoid diagnosis and treatment for the same reason: their records are not private. The Rand Corporation found that 150,000 Iraqi vets refuse treatment for PTSD because their treatment is not private, resulting in the highest rate of suicide in active duty military personnel in 30 years.

Can this commitee face reality when they have severe conflicts of interest and want the use of Americans’ health data?

The lack of privacy drives millions away from healthcare. And the lack of privacy causes suffering and death–bad outcomes.

It looks like patients’ and consumers’ best hope for preserving their health privacy rights in electronic systems may be Gayle Harrell. She may be the only committee member who can face reality.