"One of the fallacies out there is this idea that you have to choose either information exchange or privacy," he says. "Right now, your name and your address and your phone number are being sent all over the place just to try and track different data and make sure it stays attached to you. We say that’s putting your identity at risk."

Deven McGraw, director of Health Privacy Project at the Center for Democracy and Technology, says the concept of UPIs may sound appealing in theory, but when examined more closely, serious privacy concerns do, in fact, exist.

 

"The privacy issues around identifiers is when those identifiers are used for purposes beyond what they were originally intended," she says.

 

In McGraw’s view, it’s a guarantee that these identifiers would ultimately be used for other purposes. She cites the example of the Social Security number, which was originally intended for the single purpose of linking to one’s social security account. Now, Social Security numbers are used for multiple identification purposes. And so it will go with UPIs. 

 

"I think commitments or the notion that we can have a unique identifier that would be assigned to people that would only be used in health is a little disingenuous," she says. "Once that horse is out of the barn, the ability to control subsequent uses of it is out the window."

 

McGraw agrees that a set of solutions to improve data matching is necessary, but argues against UPIs as being the best answer. "The evidence is pretty clear that having an additional data field does help," she says, "But it’s not a panacea." A UPI is no less likely to be entered incorrectly than one’s address, she adds.  

 

A more sagacious solution, in McGraw’s eyes, is first and foremost to clean up and standardize data, and perhaps eventually explore voluntary identifiers, meaning that physicians would have to request a patient’s consent before accessing the information. 

 

Others disagree. "Having patients decide which doctor gets which data is the wrong choice," writes Michael Collins, MD, University of Massachusetts Medical School Chancellor, in the Jan. 23 Wall Street Journal article. "Doctors need full access to all of a patient's data, so they can deliver the appropriate care. That is the essence of the doctor-patient covenant.” 

 

Hieb says that, although he’s an advocate of UPIs, the patients should have the final word. "If the patient decides, 'Yeah, I’m willing to sell my data to this drug company so they can do this research,' the patient’s data should be anonymous," meaning patient names, addresses, phone numbers and other linked data should be erased."

 

Ultimately, however, whether the concept of UPIs borders the dystopian domain of Aldous Huxley or, in another view, approaches something like Thomas More’s Utopia, both sides argue that appearances can be deceiving – rendering it unlikely that the debate will resolve itself any time soon.