Patient privacy evangelist, analytics officer spar over data rights

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“…At the HIMSS Media/Healthcare IT News Privacy and Security Forum in Boston, patient privacy advocate Deborah Peel, MD, of Patient Privacy Rights, and UPMC Insurance Services Division Chief AnalyticsOfficer Pamela Peele took the stage to debate the highly-contested issue of whether patients should have full consent over how and with whom their personal health information records are shared.”

Key quotes from Dr. Peel:

“Forty to 50 million people a year do one of three things: avoid or delay diagnosis for critical conditions like cancer, depression and sexually transmitted diseases, or they hide information,” said Peel. “There’s the economic impact of having a system that people don’t trust.”

“He found that only a whopping 1 percent of the public would ever agree to unfettered research use of their data. Even with de-identified data, only 19 percent would agree to the use of their data for research without consent,” said Peel. “On the other hand, when people are asked if they want to participate or have their data used with consent, the public is very altruistic, so we get something very different fuller information, more complete information when the public knows what you’re doing with it and they support the project.”

 

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