The effective use of patient-reported outcomes (PROs) data is anticipated to play a critical role in improving health care delivery, patient experiences with care, and outcomes. In rheumatoid arthritis (RA), a complex chronic condition characterized by joint pain and inflammation, validated PROs have been used over the past several decades to assess levels of RA disease activity and functional status. Routine assessment of PROs is now recommended by American College of Rheumatology (ACR) guidelines, and quality measures to encourage the regular collection of RA PROs have been endorsed by the National Quality Forum. Treatment algorithms for RA rely on PROs to guide clinical decisions around use of disease-modifying drugs. Although the effective use of PRO data in RA is known to improve health outcomes, the routine use of PROs in patients with RA is inconsistent. Existing electronic health records (EHRs) are unable to effectively import PRO data or visualize PROs in a way that physicians and patients can easily understand. In response to SEN (NOT-HS-16-015), the Incorporating PRO Data into RA Clinical Encounters using Health- IT (PACT) study aims to build an application (using real-time EHR data obtained via an application programming interface) to visually represent the disease course of an individual with RA, including clinical and patient-reported information that is framed within the context of accepted clinical targets. We will engage a professional design team to work with patients and clinicians to develop a prototype front-end user-interface that can be used to communicate PRO data to patients and clinicians during routine clinical care (Aim 1). We will then work with our clinical informatics teams to build the application in 2 health systems and test them for acceptability and effects on clinical work flow (Aim 2). Finally, we will test the hypothesis that use of the PRO application during a clinical encounter will improve process and health outcomes, and patient-centered outcomes including medication adherence and shared decision making, for patients with RA using a pragmatic trial design (Aim 3). Incorporating real-time, easy-to-interpret visualizations of PRO data into clinical encounters has great potential to increase patient engagement and shared-decision making, and will drive the adoption of proven strategies (?treat-to-target?) to improve health outcomes and reduce disability. This study aims to develop scalable health IT interventions to fill the current gap in use of PRO data in practice, with the goal of improving outcomes for the 1.3 million Americans with RA.

Public Health Relevance

Rheumatoid arthritis is unique among chronic diseases for having a robust, validated set of patient reported outcomes (PROs) that have been shown to improve outcomes when used to guide clinical care. Clinicians need easy-to-use applications to display and utilize PROs efficiently in practice (Aims 1 and 2), and there is a critical need to document the effectiveness of these applications in improving outcomes across health systems and in the safety net setting (Aim 3). We will develop an application to display PROs at the point of care so that real-time conversations about PROs can occur between clinicians and patients, including those with limited health literacy. Such conversations are critical to improving the health outcomes of all patients with RA, promoting shared decision making, and reducing the disparities in outcomes that exist today.

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Research Project (R01)
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Healthcare Information Technology Research (HITR)
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Patel, Sheena
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University of California San Francisco
Internal Medicine/Medicine
Schools of Medicine
San Francisco
United States
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