Background

Registries represent an enormous investment in research infrastructure and a tremendous data resource that could be used to address new research questions in a timely and efficient manner. Yet, the value of registries as a foundation for research data infrastructure and learning health systems is currently limited by the variation in the data collected in different registries, even within the same clinical areas. This variation makes it more challenging to reuse registry data for other purposes, and at the same time increases the burden of data collection at the clinician and registry level. The development and implementation of core sets of standardized outcome measures in patient registries and clinical care would address these challenges and enable registries to realize their potential as the foundation for learning health systems and research data infrastructure.

To realize this vision, this project built on previous Agency for Healthcare Research and Quality (AHRQ) work on the Outcome Measures Framework (OMF), a conceptual model for classifying outcomes that are relevant to patients and clinicians across most conditions and development of harmonized outcomes in five areas, including depression. This project demonstrated the feasibility and value of implementing standardized outcome measures in primary and specialty care settings, using the harmonized depression outcome measures as a test case. In addition, this project extended beyond registry data to include patient-reported measures. The findings and lessons learned from this project serve as a roadmap to support future work in AHRQ developed standards-based tools and other resources to support future implementations of harmonized outcome measures in depression and other clinical areas.

Four reports related to this project are below:

• Outcome Measure Harmonization and Data Infrastructure for Patient-Centered Outcomes Research in Depression: Final Report (PDF, 2.2 MB)
• A Prioritized Research Agenda for Using the Harmonized Outcome Measures To Support Patient-Centered Outcomes Research in Depression (PDF, 858 KB)
• Data Use and Governance Toolkit: Outcome Measure Harmonization and Data Infrastructure for Patient-Centered Outcomes Research in Depression (PDF, 935 KB)
• Registry Configuration: Outcome Measure Harmonization and Data Infrastructure for Patient-Centered Outcomes Research in Depression (PDF, 699 KB)