Job 1 for the AHIC successor? -- by Nancy Ferris

Notice how the for-profit research industry wants access "baked" into all EHRs up front for research uses, to avoid getting individuals' consents.

They call this a "value case" for the nation's electronic health system. What great Lakoffian re-framing and propaganda. How do you argue against "value"?

It’s a "value" alright, just not a "value" for patients, because it sets up a system that is both unethical (no consent) and illegal (violates Amercians' longstanding rights to privacy).

The story says the research industry wants open access to "de-identified" data, but that is NOT what they tell Congress or the regulators. They say they must have access to longitudinal data, which CANNOT be de-identified, because most research cannot be conducted using de-identified data.

The new AHIC 2 will be industry-driven and industry-paid for, with so-called "standards" being devised to meet the needs of corporations, not to adhere to the laws and ethics that governed the healthcare until the '90's and the advent of electronic systems for health data.

Today there are 'smart' technology solutions to make consent easy, cheap, understandable, and instantaneous (see the consents on HealthVault by application partners for a preview of how simple and clear and specific consents can be). Electronic consents can be interactive and actually explain things, rather than be densely written in legalese so no one understands them.

Why continue to use the kind of privacy-violating blanket coerced consents that were necessary in the paper health system? 'Smart' technologies can do a far better job. Using robust consent management tools, we can obtain valid and easy-to-understand specific, time-limited, and cheap consents from millions instantaneously.

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Military health forum envisions clinical analytics -- by Peter Buxbaum

David Winn is right, when you sign up for the military, you have to do whatever they say.

The problem is that the Administration and the federal government has the same thing in mind for every American--no control over access to PHI.

The payers think they own our PHI and should be able to do whatever they want with it--even though it's both illegal and unethical. That is why industry is pressing Congress to pass an HIT bill without consumer control over access to PHI. BUT---people will lie or not participate in electronic health systems if their data is used without consent---which means we will never get the kind of research we want because the data analyzed will be incomplete and flawed.

Americans just want to be asked for consent for research and be sure that HIT systems are safe and secure.

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