Healthcare is abuzz with calls for Universal Patient Identifiers. Universal people identifiers have been around for decades and experience can help us understand what, if anything, makes patients different from people. This post argues that surveillance may be a desirable side-effect of access to a health service but the use of unique patient identifiers for surveillance needs to be managed separately from the use of identifiers in a service relationship. Surveillance uses must always be clearly disclosed to the patient or their custodian each time they are sent by the service provider or “matched” by the surveillance agency. This includes health information exchanges or research data registries.
As a medical device entrepreneur, physician, engineer, and CTO of Patient Privacy Rights, I have decades of experience with patient identifier practices and standards. I feel particularly qualified to discuss patient identifiers because I serve on the Board and Management Council of the NIST-founded Identity Ecosystems Steering Group (IDESG) where I am the Privacy and Civil Liberties Delegate. I am also a core participant to industry standards groups Kantara-UMA and OpenID-HEART working on personal data and I consult on patient and citizen identity with public agencies.