New Horizons for Consumer-Mediated Health Information Exchange

Summary

Objectives: In this paper, we discuss current trends in consumer-mediated health information exchange (HIE) within the U.S. and globally, including new approaches, relevant standards that support HIE and interoperability centered around the patient, remaining challenges, and potential future directions.

Methods: We conducted a narrative review of the peer-reviewed and gray literature to characterize the current HIE landscape in relation to patient-centered data. Our searches targeted literature in three key areas related to consumer-mediated HIE: policy and initiatives, standards, and the technology landscape.

Results: We discuss current trends in consumer-mediated exchange within the U.S. and globally, focusing on policies, standards, and technology that support information exchange centered around the patient. We also outline remaining challenges and potential future directions.

Conclusions: The current landscape in the U.S. and globally supports a more patient-centered care model. Ongoing advances in technology and data standards provide the technical infrastructure to empower consumers to electronically exchange their information with different stakeholders in ways not possible just a few years ago. These advancements hold great promise for patients to play a more central role in sharing their information in support of more patient-centered care. Additional research and analyzes along with public policies are needed.

Keywords

Health Information Exchange - Patient Generated Health Data - Consumer-mediated Exchange - Patient-directed Health Data Exchange - Electronic Health Records - Consumer Health Information

Publication History

Article published online:
08 April 2025

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