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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Electronic Health Records wired for abuse

“Oops! They did it to Britney again.” No, it’s not a song parody, but a reflection of the poor state of American health privacy - something Bay Staters should think about as their Legislature considers a bill to mandate Electronic Health Records (EHRs).

Staff members at UCLA’s Medical Center are under investigation over allegations staffers accessed Britney Spears’ medical records earlier this year. Sadly, this is not the first time individuals other than the paparazzi violated Spears’ privacy; staffers also took inappropriate peeks when her first child was born.

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Most Americans think the Health Insurance Portability and Accountability Act (HIPAA) protects their privacy and that the HIPAA notice they sign at the doctor’s office lists all of their rights to privacy. In fact, that HIPAA notice lists the vast number of ways their private health information can be used, without asking and over objections.

HIPAA was originally intended to protect privacy. Regulators earlier in this decade rewrote the rule to sanction disclosure of medical information for treatment, payment or health care operations.

“Particularly troubling about HIPAA’s Privacy Rule is the governmental authorization for covered entities to use patients’ confidential information without their consent for health care operations that are unrelated to “payment or treatment,” writes Dr. Richard Sobel, senior research associate in the Program in Psychiatry and the Law at Harvard Medical School. Sobel explains that “health-care operations” can include using information for marketing purposes, which normally would require written consent.

Data-mining firms were given a gift by the rewriting of the HIPAA Privacy Rule. Data-mining firms can obtain information about your prescriptions, treatment for mental health and genetic predisposition to illnesses. That information can be passed on to credit firms, marketing firms and even prospective employers.

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Patients need progress and privacy in this digital era. The only way to ensure we get both, and avoid the negative “celebrity treatment” Spears received, is to ensure the health IT bill signed by the governor fully recognizes the right of patient consent.

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