Patient-reported outcomes (PROs) are important in rheumatoid arthritis (RA), a condition that affects 1.3 million Americans and is a leading cause of disability. Among chronic conditions, RA has many decades of robust scientific evidence around the validity of PROs. PROs are key outcome measures in RA clinical trials and studies, are responsive to therapy changes, are strong predictors of future disability and mortality, and play a central role in facilitating shared decision-making and treatment. Advances in health information technology (IT), like electronic health record-enabled Qualified Clinical Data Registries (QCDRs), provide an opportunity to scale and spread of use of PRO measures nationally. The Rheumatology Informatics System for Effectiveness (RISE) registry is a QCDR that was established in 2014 to improve the quality of care for patients seen in rheumatology practices. The RISE informatics platform aggregates electronic health record data from participating practices, analyzes these data centrally and feeds performance on quality measures back to clinicians using a web-based dashboard. RISE currently includes one the largest PRO measurement efforts for ambulatory patients with a chronic disease in the United States. However, as the registry matures, several critical gaps remain in our national PRO measurement efforts, including the lack of representation of public hospital systems and at-risk populations, the challenges faced by some practices in creating structured data fields in electronic health records to capture PRO measure scores, and the need to evaluate the impact of the PRO collection efforts through RISE. The overarching goal of this proposal is to systematically address each of these issues by 1) creating an evidence-based clinical learning network to support the participation of public hospital systems in PRO measurement and improvement efforts through RISE, 2) developing and scaling a natural language processing system to extract PRO measures from unstructured data in clinical notes, and 3) analyzing the impact of PRO measurement through RISE on quality of care and health outcomes in RA. This proposal builds on the novel informatics platform of the RISE registry to scale, spread and evaluate PRO implementation across a nationwide network of rheumatology practices, with the ultimate goal of improving functional status outcomes for those with RA.

Public Health Relevance

The RISE-PRO project aims to use the novel health IT platform of the RISE patient registry to scale, spread and evaluate the collection of patient-reported outcomes across a nationwide network of rheumatology practices. Collecting and using patient-reported outcomes in clinical practice has the potential to transform health care for individuals with rheumatoid arthritis by making care more patient-centered and by providing tools to facilitate shared decision-making, disease monitoring, and population health management.

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Research Demonstration and Dissemination Projects (R18)
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Healthcare Information Technology Research (HITR)
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Kim, Bryan
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University of California San Francisco
Internal Medicine/Medicine
Schools of Medicine
San Francisco
United States
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