Significant variation exists in both the types and definitions of outcome measures used in patient registries, even within the same clinical area. This variation reduces the utility of registries, making it difficult to compare, link, and aggregate data across the spectrum of clinical care and reporting. To address these limitations, the Agency for Healthcare Research and Quality (AHRQ) developed the Outcome Measures Framework (OMF), a conceptual model for classifying outcomes relevant to patients and providers across most conditions; it is intended to serve as a content model for developing harmonized outcome measures for specific clinical areas.
AHRQ assessed the feasibility of using the OMF to develop standardized libraries of outcome measures in five clinical areas representing diverse populations and care settings, different treatment modalities, and varying levels of harmonization. For each clinical area, the relevant registries and observational studies are identified, and registry sponsors, informaticists, and clinical subject matter experts are invited to participate in harmonizing outcome measures through a series of in-person and web-based meetings. A stakeholder group, including payers, patient representatives, Federal partners and health system leaders, is also assembled to discuss challenges and provide feedback on the harmonization effort.
A key goal of this effort is to standardize the definitions of the components that make up the outcome measures, so users can understand the level of comparability between measures across different systems and studies. As a final step in the harmonization process, clinical informaticists map the narrative definitions (generated by the workgroups) to standardized terminologies to produce a library of common data definitions.
The clinical areas for AHRQ’s libraries of harmonized outcome measures are:
- Atrial fibrillation (PDF, 199 KB)
- Asthma (PDF, 223 KB)
- Depression (PDF, 134.2 KB)
- Lung cancer (PDF, 354 KB)
- Lumbar spondylolisthesis (PDF, 379 KB)
This White Paper describes methods and lessons learned in standardizing outcomes (PDF, 556.1 KB).