Rheumatology Informatics System for Effectiveness Patient-Reported Outcome (RISE PRO) Dissemination Project (California)

Project Details - Ongoing

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Summary:

Rheumatoid arthritis (RA) is a leading cause of disability, affecting 1.3 million Americans. Patient-reported outcomes (PROs) are used by rheumatology practices to guide management of RA, monitor symptoms, engage patients in disease tracking and shared decision making, and assist with quality reporting and benchmarking. However, use of RA PROs is inconsistent, with some practices not collecting them at all. In 2014 the American College of Rheumatology (ACR) created the Rheumatology Informatics System for Effectiveness (RISE) registry, a qualified clinical data registry (QCDR), that aggregates electronic health record (EHR) data from participating practices, analyzes these data centrally, and feeds quality performance measures back to clinicians using a web-based dashboard. Notably, there are currently no public hospital systems participating in RISE, and less than 3 percent of patients in the registry have Medicaid.

This project will create and evaluate a learning network to increase the use of PROs, with a focus on public hospital systems and at-risk populations. It will also create a scalable natural language processing (NLP) system to extract PRO measures from clinical notes for RISE.

The specific aims of this project are as follows:

  • To create an evidence-based clinical learning network to support the participation of public hospital systems in PRO measurement and improvement efforts through RISE. 
  • To develop and scale an NLP system to extract PRO measures from clinical notes in the EHR.
  • To analyze the impact of the RISE PRO learning network on quality of care and health outcomes in RA. 

The RISE PRO network will utilize tools to engage organizations, including a website, email listserv, quarterly live webinars, and in-person meetings. In the initial phase of the project, the project team will engage rheumatology clinics in several public hospital systems in California. A mixed-methods approach will be used to evaluate the network, using the RE-AIM framework of reach, efficacy, adoption, implementation, and maintenance. An interrupted time series study will be conducted among practices new to RISE to understand the registry’s impact on PRO measurement, quality, and RA outcomes.

Collecting and using functional status PROs in clinical practice has the potential to transform healthcare for RA by making care more patient-centered and by providing tools to facilitate shared decision making and disease monitoring. If this effort is successful, the ACR has committed to sustaining and funding the learning network with a goal of reaching additional public hospital systems across the Nation providing caring for RA patients.

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Unlocking the Potential of PROs in Clinical Notes for Treating Rheumatoid Arthritis

Significance and Potential Impact

Use of NLP and PROs has the potential to transform the care of patients with RA, and to reduce health disparities for underserved and minority populations.

Rheumatoid arthritis (RA) affects 1.3 million Americans, and those with low socio-economic status experience disparities in outcomes. PROs are used by rheumatologists to inform the care and treatment of patients with RA. Collection of this information is not standardized and, therefore, it cannot be reliably used for population health research. Furthermore, uninsured and minority patients are under-represented in health research, and RA research in particular. In a world where copious health data are collected, it is vital that these data represent the entire population.

Using natural language processing to drive quality improvement for rheumatoid arthritis care and treatment.

Dr. Jinoos Yazdany at the University of California in San Francisco is leading research to extract PROs documented in clinical notes using NLP. As the work progresses, the team will focus their efforts on aggregating RA PROs from participating public hospitals into a database that will be used to track improvements to agreed-upon measures. Dr. Yazdany’s research is aligned with AHRQ’s priority areas of patient-centered outcomes research and reducing health disparities among racial and ethnic minorities. Using NLP to aggregate PROs in clinic visit notes at public hospitals provides an opportunity to improve rheumatology care and treatment, particularly for vulnerable populations that experience the most health disparities. If successful, this research has the potential to transform healthcare for RA by making care more patient centered and by providing tools to facilitate shared decision making and disease monitoring.

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