PURPOSE: This workshop will explore the challenges of implementing harmonized outcome measures in patient registries and other observational studies. Discussion leaders will review current efforts to produce harmonized data elements and outcome measures, with a particular emphasis on a multi-condition, multi-stakeholder effort funded by the Agency for Healthcare Research and Quality (AHRQ) that developed harmonized outcome measures for use in patient registries and clinical practice in five condition areas. Drawing on these examples, discussion leaders will engage participants in conversations about potential barriers to implementation of data standards and explore ideas for encouraging and incentivizing adoption of data standards in new registries and other data collection efforts.

DESCRIPTION: Thousands of patient registries and other observational studies exist to address specific research questions, support population health management, and improve quality of care and patient outcomes. Standardization of the data elements and outcome measures used in these studies would yield several benefits, including reduction of the burden of data entry and increased opportunities for linking and sharing data across studies. Many efforts have been launched to harmonize registry data elements and outcome measures, yet relatively few practical examples have succeeded. The recent AHRQ effort to harmonize outcome measures using the Outcome Measures Framework (OMF) focused on measures that were patient and clinician-relevant and included in-depth conversations with over 120 registry sponsors and other stakeholders about potential barriers to use of the harmonized measures. This workshop will extend those conversations to a new audience to fully explore barriers to implementation, identify real-world examples of uses of data standards, and develop innovative approaches to encouraging and incentivizing implementation of data standards. Dr. Berliner will describe the need for harmonization and current efforts to harmonize registry data, while Dr. Gliklich will provide an example of harmonized outcome measures based on the AHRQ effort.