Patient privacy evangelist, analytics officer spar over data rights

"There's the economic impact of having a system that people don't trust."
By Erin McCann
11:04 AM
Pamela Peele, chief analytics officer, UPMC Insurance Services Division

In healthcare, virtually nothing is black and white. From Obamacare to varying payment and care models, healthcare issues live in the land of gray and opaque where dissenting opinions reign. The idea of patient privacy and consent proves no exception. 

This week 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 Analytics Officer 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. 

Pamela Peele, who maintains that multiple stakeholders have a right to access and use patient health information, framed her argument by starting off with an education analogy. Taxpayers and federal and state governments realized the economic value of educating the public and thus invested some $955 billion in funding education. "If you're not healthy enough to take that education into the workplace, what happened to our public investment?" asked Peele. 

[See also: Ready or not: HIPAA gets tougher today.]

Public investment in healthcare proves even more striking, she added. Federal and state healthcare expenditures are currently pegged at nearly $3 trillion, with a recent Thomson Reuters report showing that the system wastes $700 billion a year. That's a form of the public's investment, and "there may be other stakeholders who have property rights to these data," said Peele.

"How do we judge whether or not we're delivering healthcare (effectively)?" asked Peele. "We need to be able to see this type of information on a personal health record in order to understand the (ethics) and safety and what we're doing with our healthcare dollars."

Patient Privacy Rights' Deborah Peel disagreed, adding that failing to give patients full control over their health records is first bad news from an economic perspective. 

"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."

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.

"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."

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."

Although the Peel vs. Peele discussion proved altogether civil, amiable even, the issue of patient privacy and consent over health data was, again, left unsettled.