Spreading and Scaling Use of Patient-Reported Outcomes for People with Rheumatoid Arthritis


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Development of a toolkit to facilitate the scale and spread of using patient-reported outcomes among rheumatoid arthritis patients fills an existing gap in national resources to provide support to rheumatologists.

Using patient-reported outcomes is effective, but often underused, in ongoing management of rheumatoid arthritis

Over one million Americans have rheumatoid arthritis, a condition that causes pain and swelling in the joints, fatigue, and profound joint stiffness. Over time, inflammation can cause joint deformities and impair physical functioning, significantly impacting a person’s quality of life. Routine measurement and monitoring of patient-reported outcomes (PROs), including symptoms of physical functioning, is effective in helping clinicians and patients monitor symptoms and make treatment decisions.

A wide body of evidence and guidelines from the American College of Rheumatology (ACR) supports using PROs to help clinicians monitor rheumatoid arthritis and to help patients track their progress on treatment. Nevertheless, the use of PROs is inconsistent, with some practices not collecting them at all. Dr. Jinoos Yazdany, a practicing rheumatologist, wanted to change that: “We have a long history of using PROs in rheumatoid arthritis. They're validated and feasible to use. Patients want their doctors to use and discuss PROs. The next important hurdle is to cross the implementation divide by getting people to consistently use them in a way that both doctors and patients find meaningful.”

Clinical learning network supports use of PROs for patient care

Teaming with the ACR, Dr. Yazdany convened a clinical learning network, with a focus on public hospital systems, to advance PRO measurement and use in rheumatology practices. The network committed to answering the question: “How can PROs be collected and used in a patient-centered way to improve outcomes for rheumatoid arthritis at every clinical encounter?” Participating groups used Plan-Do-Study-Act cycles to test and improve workflows and shared feedback and lessons learned with the group. The learnings from the group were incorporated into a toolkit for national dissemination, described below.

A second goal of the project was to address one of the biggest challenges for using PROs at the point of care: the fact that much of the information is buried in clinical notes in electronic health records (EHRs). Dr. Yazdany and her team at the University of California San Francisco worked with computer scientists at Stanford University to develop and validate a natural language processing (NLP) system. This NLP system reliably extracted PROs from clinical notes in more than 300 rheumatology practices, representing over 40 EHR systems that participate in the RISE registry, an EHR-based Qualified Clinical Data Registry that comprises 3 million people with rheumatic diseases. To support national dissemination, the NLP algorithm is publicly posted on GitHub.

“We only see patients for 1% of their lives, and so allowing them to actually have data and tools to manage their own disease in between visits, which is the rest of the 99%, is really important.”- Dr. Jinoos Yazdany

Network shares what they learned to scale use of PROs

Among the key findings of the learning network were that patients and clinicians were generally motivated to collect PROs, and clinicians wanted practical tools to be able to implement the PROs in their practices. Using data gathered from the learning network as well as extensive qualitative interviews from rheumatology practices around the country to learn best practices for PRO collection, the team opted to package learnings from the project into a toolkit to facilitate the scale and spread of rheumatoid arthritis (RA) PROs across practices. The toolkit—freely available on the ACR website—should fill a gap in national resources to provide support in this area to rheumatologists.

The RA Toolkit includes resources on: how to select the appropriate PROs to use; tips for using PROs to succeed in Federal quality reporting programs like the Merit-Based Incentive Payment System; how to develop efficient workflows for collecting rheumatoid arthritis measures (e.g., PRO collection for in-person versus telehealth); considerations for PRO collection in diverse populations, including non-English speaking populations; case studies describing practices with high performance on PRO-based quality measures; how to benchmark PRO quality measures through the RISE registry; and a nursing staff training guide about effective collection of PROs in practice.