Medical Researchers
policy issues
HIPAA’s Broken Promise
If you hate HIPAA, it’s your lucky day. Paul Ohm is handing you ammunition in his article, “Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization.” His argument: our current information privacy structure is a house built on sand. “Computer scientists…have demonstrated they can often ‘reidentify’ or ‘deanonymize’ individuals hidden in anonymized data [...]
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Immediate data requested. Please share with breast cancer patients everywhere.
Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers. It details how, in the absence of sufficient medical data for their cases, patients and parents have conducted extraordinary research, time after time, often stunning the medical professionals. A key sentence in Chapter 5 is “One of the great benefits of patient-initiated research [...]
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