Battle over privacy of de-identified data continues

Think the tug-of-war between vendors, health systems and privacy advocates over data mining and de-identification of patient records is subsiding? Think again.

The outspoken Dr. Deborah Peel has a memorable line that she often repeats: "Once your information is released, it's like a sex tape that lives in perpetuity in cyberspace," she says in a Dallas Morning News story. "You can never get it back." The Morning News last week took a look at the contentious struggle for control of data that must be resolved before the healthcare industry is to fulfill President Obama's vision of a nationwide, interoperable system of EMRs and health information for all Americans.

In the Dallas-Fort Worth area, every major health system has either implemented or has budgeted for EMRs and health information exchange, and most use vendors that aggregate, de-identify, mine and sell patient records. Cerner, for example, which has some 200 customers in Texas alone, shares what the Morning News calls "unidentifiable" records, stripped of patient names and Social Security numbers. But the newspaper cites the work of University of Texas computer science professor Vitaly Shmatikov, who developed an algorithm to identify supposedly anonymous postings of people's Netflix movie preferences.

A vice president at Cook Children's Physician Network in Fort Worth calls the the EMR there "as safe as online banking." But Peel isn't convinced because a breach involving ultra-sensitive data about mental health or HIV treatment could do irreparable damage to people's reputations.

To explore this issue at greater length:
- read this Dallas Morning News story