After Nearly Two Decades, a Win in Congress for Patient Data Matching

I have good news to share with you: after 19 years of dedicated effort – first by CHIM, and then a collaboration of HIMSS and our partners in the health IT community – Congress has included report language with its bipartisan Omnibus spending bill to clarify its prohibition on the unique patient identifier (UPI). 

Levied on HHS in the summer of 1998, the prohibition was put in-place due to backlash from privacy concerns emanating from UPI language included in HIPAA (signed into law in 1996). Unfortunately, the fiscal year 1999 appropriations language has prohibited HHS – for 19 years – from engaging with the private sector on anyconversation pertaining to a UPI, or anything that could sound like a UPI. 

In the interim years, much has changed in the world of technology and healthcare. No longer is a UPI considered a credible solution for the magnitude of the challenge.  Rather, the focus has shifted to patient data matching and the need for a coordinated national strategy across the public and private healthcare sectors.

For 19 years, we and our collaborators have carried the torch to get the Congressional language addressed.  We’ve included it annually in our Congressional Asks, collaborated with numerous like-minded associations, and discussed it consistently with Members on both sides of the aisle.

Most importantly, we put words into action: since September 2013, HIMSS has funded an Innovator In Residence Fellowship.  As the resident Fellow through the Office of the HHS Chief Technology Officer, Adam Culbertson has worked on a patient matching strategy.  We’ve hosted testing challenges, trainings, and done much education in the public and private sectors on a patient matching strategy.

Thanks to these combined efforts, report language accompanying the FY17 Omnibus appropriations legislation includes the following clarification:

Unique Patient Health Identifier.—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. With the passage of the HITECH Act, a clear mandate was placed on the Nation’s healthcare community to adopt electronic health records and health exchange capability. 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, acting through the Office of the National Coordinator for Health Information Technology and CMS, 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.

I wanted to share this news with you; and, take a moment to congratulate and appreciate all the people over the past 19 years who have engaged and worked collectively towards this shared goal.