Generating Real-World Evidence From the Excellence Network in Rheumatology.

PURPOSE

The Excellence Network in RheumatoloGY (ENRGY) was founded in 2021 and encompasses data from more than 700 private practice rheumatology providers throughout the United States, forming a practice-based research network (PBRN).

METHODS

Electronic health record (EHR) data from participating practices are aggregated, including structured data (e.g., clinical assessments) and unstructured data from two different EHR platforms. Targeted data quality efforts ensure capture of high-quality clinical data and reduce missingness. ENRGY network membership also provides participating sites access to technology services that enhance patient care. Centralized ethics approval and pre-existing legal agreements along with electronic tools to curate data and contact eligible study participants improves efficiency of multi-center prospective studies.

RESULTS

The ENRGY data warehouse includes linked administrative claims data for commercial and government-provided insurance (31% of patients linked to commercial claims) and patient-generated health data from both in-office and out-of-office settings via a smartphone app as well as biosensor data. ENRGY data and infrastructure can be employed to identify the highest yield sites for prospective studies; identify patients meeting study eligibility criteria; pre-screen individual patient's willingness to participate in specific studies; centralize study data monitoring; and assist in the conduct of prospective studies.

CONCLUSION

ENRGY data have been used to generate a growing number of scientific publications and may serve as a model for PBRNs in other specialties seeking to harness the potential of data linkages, patient-generated data capture, and centralized study infrastructure for observational and interventional research.