Patients may battle over data rights

Privacy advocate, analytics officer spar over property rights
By Erin McCann
12:00 AM

Ultimately, she opined, the individual rights of a person should be paramount.

Peel then pointed out research done by the former Alan Westin, then Columbia University professor of public law and government, who conducted studies on public attitudes toward research data.

"Fifty eight percent agree that medical-records privacy is not sufficiently protected today," Westin wrote in his 2007 report.

"(Westin) 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."

Although Peele conceded that patients are indeed more willing to share their data when they're asked, she said the opt-out makes for a fragmented, incomplete dataset. "If we allowed students to opt out, what would we know about school systems? If we allow people to opt out, we've lost our ability to have an unbiased view," said Peele, who opined that the data has to be "all or nothing."

Deborah Peel retorted: Scientists and statisticians alike would "absolutely disagree" with the notion of needing to have complete data to have accurate data. There's never been a time where we've ever had complete data on everybody, added Peel. "The best chance of getting the most accurate data is when you have people who cooperate."

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