The past decade has brought sweeping developments in rheumatoid arthritis (RA) treat to target strategies. High numbers of RA patients in clinics and simple identification have helped generated a large amount of data that have, in turn, propelled RA treatment advances, research findings and new quality measures. The ACR hopes to drive a similar trajectory with systemic lupus erythematosus (SLE). Building upon prior funding from the Centers for Disease Control and Prevention (CDC) to develop programs to build SLE awareness, knowledge, skills and partnerships, the ACR received a $7 million grant for a new four-pronged SLE approach in September 2020.
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This new project seeks to address knowledge gaps and demographic-based inequities in SLE through physician education, medical school outreach, pediatric support and disease management. In one project aim, described by CDC grant reviewers as ‘ingenious,’ the ACR will use the Rheumatology Informatics System for Effectiveness (RISE) registry to expand tracking of lupus to improve patient care.
“Broadly, the RISE project aims to increase the role of technology in the clinical setting for early detection of lupus and management of the disease by supporting and integrating electronic health record (EHR) data,” explains Christie M. Bartels, MD, MS, associate professor and Rheumatology Division Chief, University of Wisconsin School of Medicine & Public Health. Dr. Bartels is co-lead of the RISE project’s working group and also serves as chair of the ACR’s Research and Publications Subcommittee of the Committee on Registries & Health Information Technology (RHIT).
“Despite a lot of information from trials, there is little consolidated guidance about what to routinely track with lupus patients,” says Dr. Bartels. “First, we want to bridge that gap by identifying what data are important to collect about a lupus patient. Then, we want to see how RISE can support that data collection and sharing to track quality of care, improve outcomes and reduce disparities for SLE patients.”
Identifying Data Points
The ACR’s RISE registry extracts data from the electronic health record systems of participating practices. As a rheumatology-specific registry, RISE stores data from all patient encounters, regardless of diagnosis or coding differentiation. However, without distilling key data points on patient care gaps and outcomes, rheumatologists can lack a clear picture of how their SLE patients are doing.
To identify these data points, Dr. Bartels and co-lead Jinoos Yazdany, MD, MPH, established a workgroup of experts who will evaluate literature to identify data elements vital to assessing the disease state and monitoring of SLE patients. This diverse workgroup represents various stakeholders, including academia, private practice, RISE users and patients. Once the workgroup has finalized its recommendations, the ACR will build tools within the RISE registry to assist in data collection and provide users with feedback on their efforts to track key lupus patient care measures and outcomes.