The patient identifier debate

Will a national patient ID system ever materialize? Should it?
By Erin McCann
04:08 PM

The idea of unique patient identifiers (UPIs) could very well be reality in the not-so-distant future. Despite the current standstill at the federal level, other efforts to implement UPIs are very much moving forward.

Barry Hieb, MD, chief scientist at Global Patient Identifiers, a healthcare nonprofit organization that sponsors a voluntary universal healthcare identifier system, says that's a good thing. 

He points to the case of Houston's enterprise master patient index (EMPI) system, a database of some 3.5 million patients. In that database alone, there exist nearly 250,000 patients with the same first and last name and 70,000 instances where two people share first names, last names and birthdates. 

"What that means is that the EMPI matching algorithm really can't do a good job because there's just a lot of uncertainty," Hieb says.

And, as Hieb has witnessed, that uncertainty can have serious consequences for patient care. First, it can lead to a false negative, which occurs when two records ought to be merged as they are on the same patient, but due to a mistype, they exist as two separate records. This, he says, could lead to the loss of certain lab test results. 

What's more dangerous, he adds, are the false positives, which occur when two patient records are merged, and one patient gets treated for another patient's disease, a mistake that could prove fatal. 

"The problem is that now as we're moving to regional and statewide and even national information exchange on patients, we've got to get really serious about accurate patient identification."

Hieb cites a 2008 RAND study that made the case for UPIs, concluding that identifiers are "clearly desirable for reducing errors, simplifying interoperability, increasing efficiency, improving patient confidence, promoting NHIN architectural flexibility and protecting patient privacy."

Researchers estimated the one-time cost of such system at between $1.5 billion to $11.1 billion, but could represent a total $77 billion per year in cost savings. 

However, opponents of UPIs opine that the supposed clinical and financial benefits of such technology are far inferior to that of the harm they can precipitate for physician-patient trust and individual privacy rights.

Deborah Peel, MD, founder of Patient Privacy Rights, and a fierce opponent of UPIs, wrote in a Jan. 23 Wall Street Journal piece, "In the end, cutting out the patient will mean the erosion of patient trust. And the less we trust the system, the more patients will put health and life at risk to protect their privacy."

Peel pointed to the present reality of patient health information  -  such as genetic tests, claims data and prescription records  -  already being sold and commercialized. "Universal healthcare IDs would only exacerbate such practices," she wrote. 

Although Hieb agrees patient privacy concerns exist with UPIs and admits these concerns need to be addressed, he argues that identifiers, if done properly, can enhance patient privacy.

"One of the fallacies out there is this idea that you have to choose either information exchange or privacy," he says. 

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 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, they're 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. 

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.

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 piece. "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." 

One thing both sides can agree on, however, is the fact that the debate is unlikely to be resolved any time soon. n