Incorporating PRO Data Into RA Clinical Encounters Using Health-IT (PACT)

With an ever-growing body of electronic health record (EHR) data, including patient-reported outcomes (PROs), one important role for digital healthcare technology tools is to help summarize this data for incorporation into real-time clinical decision making. Graphical displays of structured data (such as blood pressure, hemoglobin A1C, and other laboratory test results) are commonly available in many EHRs or patient portals, and can be used by clinicians or patients. However, there has been less progress in developing tools to track chronic disease outcomes. For example, even when documented as structured data in the EHR, PROs are not easily tracked over time for seamless interpretation by clinicians or patients during a clinical visit.

Rheumatoid arthritis (RA) - a chronic inflammatory disease in which individuals develop joint pain, stiffness, and swelling - is a pertinent case study for the development of a PRO application because the condition has several key disease outcomes, including disease activity, functional status, and pain, which are captured routinely as structured fields in the EHR. The objectives of this study were to build, implement, and test an application to display PRO scores for patients with RA during a clinical visit, with the goal of improving shared decision making, patient self-efficacy, and other RA outcomes.

The specific aims of the research were as follows:

• Develop a dashboard that visually represents the trajectory of PROs for patients with RA in a way that is meaningful to patients and clinicians.
• Implement a dashboard to visualize PROs for RA in real-time.
• Evaluate the effect of the PRO dashboard on quality of care and health outcomes.

Researchers designed the application to visually represent the trajectory of an individual with RA, include clinical and patient-reported information, and frame this course within the context of accepted clinical targets. The team engaged 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. Working with a clinical informatics team, the team built and launched the application at the University of California, San Francisco Health Rheumatology Clinic. The team then conducted a pragmatic trial to test whether the availability and use of the PRO application affected patient-centered outcomes, such as medication adherence, shared decision making, and additional RA outcomes.

The RA PRO dashboard application required extensive human centered design work, regulatory approvals, software development, user testing, integration with EHR-based workflows, and maintenance. Implementation science strategies were used to improve use of the dashboard in clinic and included education for patients, staff, and clinicians, as well as reports of actual use of the dashboard and data quality. Additionally, regular meetings were conducted between the research team and clinicians to discuss and address barriers to use. The evaluation revealed small effects on measures of shared decision making and self-efficacy over a one to two year follow up period; however, these were not statistically significant. Despite these limited findings of the trial, the qualitative evaluation of patient and clinician perceptions of the RA PRO dashboard were strongly positive. Larger and longer-term studies are needed to understand the effects of this and similar dashboards on patient outcomes.