By ADRIAN GROPPER, MD

The HHS Office of National Coordinator (ONC) hosted a well-attended Annual Meeting this week. It’s a critical time for HHS because regulations authorized under the almost unanimous bi-partisan 21stC Cures Act, three and a half years in the making, are now facing intense political pressure for further delay or outright nullification. HHS pulled out all of the stops to promote their as yet unseen work product.

Myself and other patient advocates benefited from the all-out push by ONC. We were given prominent spots on the plenary panels, for which we are grateful to ONC. This post summarizes my impressions on three topics discussed both on-stage and off:

• Patient Matching and Unique Patient Identifiers (UPI)
• Reaction to Judy Faulkner’s Threats
• Consumer App Access and Safety

Each of these represents a different aspect of the strategic interests at work to sideline patient-centered practices that might threaten the current $Trillion of waste. 

The patient ID plenary panel opened the meeting. It was a well designed opportunity for experts to present their perspectives on a seemingly endless debate. Here’s a brief report. My comments were a privacy perspective on patient matching, UPI, and the potential role of self-sovereign identity (SSI) as a new UPI technology. The questions and Twitter about my comments after the panel showed specific interest in:

• The similarity of “enhanced” surveillance for patient matching to the Chinese social credit scoring system.
• The suggestion that we already have very useful UPIs in the form of email address and mobile phone numbers that could have been adopted in the marketplace, but are not, for what I euphemistically called “strategic interests”.
• The promise of SSI as better and more privacy preserving UPIs that might still be ignored by the same strategic interests.
• The observation that a consent-based health information exchange does not need either patient matching or UPIs.