LIVE BLOG: Notes on Medical Privacy Panel – Dr. Deborah Peel and Jeff Chester

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Jeff Chester, executive director, Center for Digital Democracy:

Would appropriate a catch phrase to describe online marketing: "Don't Ask, Don't Tell" – because what websites and data collectors tell you is different from what they tell advertisers.

Companies are targeting the unconscious mind, using behavioral, geo-medical, and condition targeting. They're collecting information about serious diseases – alzheimers, COPD, cancer. They promise marketers they can "follow the online patient journey," or go straight to your doctor to ask for your branded medications. And they use this information to guide (push) consumer medical decisions.



Dr. Deborah Peel, founder, Patient Privacy Rights:

How long have we been waiting for a definition of privacy and patient consent?

Few know that the right of patient consent [for sharing their medical information] in HIPAA was removed – replaced with regulatory controls. Now consumers are told "only authorized users" can access their records. But that means thousands of companies because everyone is authorized.

Insurers are now doing actuarial research about people without actually getting their medical records.

Bottom line: there's no separate environment for health data. 

PPR and Zogby International released a great poll showing almost everyone – 97-98 percent – want the highest medical privacy protections.

Top priorities to protect medical privacy: A law protecting information wherever it is — the protections should follow medical data. Placing medical privacy at the top of the agenda for the new White House privacy initiative.

Increasingly, it's impossible to distinguish between actual patient records – electronic or otherwise – and a consumer's medical-related activity that's tracked and collected online.


Presentations will be online soon.

Carmen Balber
Carmen Balber
Consumer Watchdog executive director Carmen Balber has been with the organization for nearly two decades. She spent four years directing the group’s Washington, D.C. office where she advocated for key health insurance market reforms that were ultimately enacted into law as part of the Affordable Care Act.

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