Unique Patient Identifier Funding Once Again Barred by Congress

WASHINGTON — With all the fuss about the many healthcare items included in the omnibus fiscal year 2023 spending bill passed by Congress in December, little notice was taken of one thing that didn’t change: the federal government still can’t develop a unique patient identifier (UPI).

Many healthcare organizations have been clamoring for a UPI, also known as a universal patient identifier or a national patient identifier, for years. “Without the ability of clinicians to correctly connect a patient with their medical record, lives have been lost and medical errors have needlessly occurred,” dozens of medical organizations, including the American College of Surgeons, the Medical Group Management Association (MGMA), and the American College of Physicians (ACP) wrote last May in a letter to House and Senate leaders.

“These are situations that could have been avoided had patients been able to be accurately identified and matched with their records,” the letter said. “This problem is so dire that one of the nation’s leading patient safety organizations, the ECRI Institute, named patient misidentification among the top ten threats to patient safety.”

“The lack of a national strategy on patient identification also causes financial burdens to patients, clinicians, and institutions,” the letter continued. “The expense of repeated medical care due to duplicate records costs an average of $1,950 per patient inpatient stay, and over $1,700 per emergency department visit. Thirty-five percent of all denied claims result from inaccurate patient identification, costing the average hospital $2.5 million and the U.S. healthcare system over $6.7 billion annually.” The letter urged Congress to “ensure that Section 510, the archaic funding ban on a national unique health identifier, is NOT included in the FY2023 Labor, Health and Human Services, Education, and Related Agencies Appropriations bill.”

Prohibited Since 1999

The ban the letter mentioned — Section 510 of the fiscal year 2021 House Appropriations Labor, HHS, Education, and Related Agencies Subcommittee spending bill — reads as follows: “None of the funds made available in this act may be used to promulgate or adopt any final standard … providing for, or providing for the assignment of, a unique health identifier for an individual (except in an individual’s capacity as an employer or a health care provider), until legislation is enacted specifically approving the standard.”

That rider was originally inserted into an HHS budget bill in 1999 by then-Rep. Ron Paul (R-Texas). It has remained there every year since, largely at the behest of Paul’s son, Sen. Rand Paul, MD (R-Ky.), even though the House has passed measures to remove it. “As a physician, I know firsthand how much the doctor-patient relationship relies on trust and privacy, which would be undermined by a national patient ID,” Paul, an ophthalmic surgeon, said in an email to MedPage Today. “Now, more than ever, it is crucial to protect Americans’ genetic information from theft by foreign actors like China and prevent the government from centralizing patients’ personal health records or interfering with their medical decisions.”

HHS has taken the rider very seriously — so much so that for a while the agency refused to even discuss the issue. That prompted members of the appropriations subcommittee to insert a paragraph addressing the issue in its 2017 report.

“The committee is aware that one of the most significant challenges inhibiting the safe and secure electronic exchange of health information is the lack of a consistent patient data matching strategy,” the report said. “Although the committee continues to carry a prohibition against HHS using funds to promulgate or adopt any final standard providing for the assignment of a unique health identifier for an individual until such activity is authorized, the committee notes that this limitation does not prohibit HHS from examining the issues around patient matching. Accordingly, the committee encourages the secretary … to provide technical assistance to private-sector-led initiatives to develop a coordinated national strategy that will promote patient safety by accurately identifying patients to their health information.”

Support From Physician Groups for a UPI

Many physician organizations strongly favor a UPI. “MGMA has long advocated for a patient identification and matching solution to alleviate the undue administrative burden and costs resulting from duplicative patient records and rectify the significant threat to safety that occurs when patients cannot be accurately matched with their medical records,” Anders Gilberg, MGA, senior vice president for government affairs at the association, which represents physician practices, said in an email (Disclosure: Gilberg is a member of the MedPage Today editorial board).

“It is critical that HHS’s ability to explore a variety of patient ID and matching initiatives, all [of] which ensure protected health information remains secure, is not further hamstrung by these efforts to block progress for over 20 years,” Gilberg said. “Future legislation must ensure this archaic ban on funding research and development surrounding patient identification and matching efforts is lifted.”

Some other groups have a more nuanced response. “The American College of Physicians believes that use of a Voluntary Universal Unique Healthcare Identifier to which patients could opt in could provide privacy benefits and that its potential use should be studied,” Shari Erickson, MPH, ACP chief advocacy officer and senior vice president of governmental affairs and public policy, said in an email. “Accurate identification of patients and accurate association of patients with their data is a safety issue.

“A voluntary universal unique identifier for patients that has no other use beyond associating them with their health records might be less risky than using a set of demographic information that could have value beyond identification for health care purposes,” she added. “We believe that this issue should not be dismissed without thorough evaluation of the potential risks and benefits. Therefore, ACP strongly recommends that HHS and ONC [Office of the National Coordinator for Health Information Technology] initiate a thorough study of the risks and benefits of a voluntary universal unique patient identifier.”

The American Medical Association’s (AMA) position is less clear-cut. One of its policies, first adopted in 2001 and reaffirmed in 2011, reads, “Our AMA: actively supports legislation that would repeal the unique patient medical health identifier mandated by the Health Insurance Portability and Accountability Act of 1996; and urges all state medical societies to ask each of their congressional delegations to declare themselves publicly on this matter.” But another policy, adopted in 2010 and reaffirmed in 2021, states that “Our AMA, along with other stakeholders, will work with the ONC to develop a strategy for [a] patient identification system at the national level.”

ONC Work on Patient Matching

The ONC, for its part, is moving ahead with other ways to solve the problem. “We are doing a lot of work to try to improve patient matching — we’re not prohibited from doing that,” ONC national coordinator Micky Tripathi, PhD, MPP, said in a phone interview at which a press person was present. “I think there’s a lot of interest in the Congress and elsewhere in saying, ‘Well, in the absence of a universal patient ID, are there things that we can do to improve the matching of records?'”

The ONC is working with the U.S. Postal Service to have a standard way of representing a U.S. address, he said, “so that ‘road’ is always ‘R-O-A-D.’ It seems like a trivial issue when you’re matching records when one says ‘Rd.’ and the other says ‘Road,’ but the dumb computer says, ‘No, that’s not the same.’ You want to be able to standardize things so you can have better patient matches.”

ONC has an initiative known as “Project US@” to move forward with that standardization, according to Carmen Smiley, senior health IT specialist at ONC. “Project US@ aims to provide guidance to software developers who design and maintain health IT systems and to healthcare staff who record and verify your address and other information to assist them with accurately matching you to your correct health record in a standardized way,” she explained in an email.

The first version of the guidance was named as the required standard for current and previous patient address in version 3 of the U.S. Core Data for Interoperability (USCDI) — a standard set of data elements used to encourage health record interoperability. “Although this version [3] of USCDI is not yet required for the ONC Health IT Certification Program, we expect to name this version of USCDI in future regulation,” Smiley said.

Cheryl Clark contributed to this story.