The Patient Role in a Federal National-Scale Health Information Exchange

The federal Trusted Exchange Framework and Common Agreement (TEFCA) aims to reduce fragmentation of patient records by expanding query-based health information exchange with nationwide connectivity for diverse purposes. TEFCA provides a common agreement and security framework allowing clinicians, and possibly insurance company staff, public health officials, and other authorized users, to query for health information about hundreds of millions of patients. TEFCA presents an opportunity to weave information exchange into the fabric of our national health information economy. We define 3 principles to promote patient autonomy and control within TEFCA: (1) patients can query for data about themselves, (2) patients can know when their data are queried and shared, and (3) patients can configure what is shared about them. We believe TEFCA should address these principles by the time it launches. While health information exchange already occurs on a large scale today, the launch of TEFCA introduces a major, new, and cohesive component of 21st-century US health care information infrastructure. We strongly advocate for a substantive role for the patient in TEFCA, one that will be a model for other systems and policies.