Building a Holistic View for Patient-Focused Evidence: A Policy Framework for High Quality Source Data Collection, Curation, and Linkage

Issue

The United States health care system lacks an integrated, interoperable infrastructure for collecting and linking longitudinal patient data across care settings. Information from electronic health records (EHRs), patient reported outcomes (PROs), claims, and other real-world data (RWD) sources has the potential to generate real-world evidence (RWE) that supports innovation, clinical decision-making, and value-based payment models.

Opportunity

The Duke-Margolis Institute for Health Policy conducted a review of source data quality, collection, curation, and linkage—informed by an extensive landscape analysis and 41 real-world use cases. The analysis illustrates the promise and current limitations of generating clinical evidence within the U.S. health care system. Its results lay the foundation of a policy framework to enable more routine, reliable use of longitudinal patient data to support learning health care systems.