Background/Purpose: There is a significant need in the rheumatology community to access and integrate data across diverse patient populations in order to aid quality improvement efforts, help rheumatologists meet quality reporting requirements, as well engage in clinical research. We report on the pilot results of the American College of Rheumatology’s registry expansion initiative that links disparate clinical data resources across multiple clinical sites and systems in support of rheumatology practice and research.  This effort is aimed at providing a reliable, cost-effective means of connecting data from multiple EHR systems, using these data for quality improvement, quality reporting, and research querying.

Methods: The design and execution of effective quality improvement projects and clinical studies requires access to high quality, longitudinal data.  In most instances, such data are collected, formalized, stored and retrieved using project- or organization-specific disease registries or data warehouses.  It is increasingly desirable to access data across multiple clinical sites for quality improvement and clinical research purposes, but disparate EHR systems remain difficult to connect for data interchange.  Furthermore, in these types of settings, organizational and policy barriers often preclude the use of centralized repositories.  To address this need, the ACR is piloting this system – called the Rheumatology Informatics System for Effectiveness (RISE) – to enhance registry efforts to benefit rheumatic disease research and quality reporting efforts. RISE is a federated system of interconnected clinical data repositories.  The RISE architecture allows data to remain at the sites thereby allowing sites full control of their data. Data is accessed by a Federated Query Processor service that maintains no source practice data internally, but instead acts as a secure router and aggregator for information as it passes through the grid. The RISE system enables access to clinical data across multiple sites while maintaining high levels of data security.

Results: The model employed by RISE uses an approach to enable the federated query of geographically distributed data sources. This platform is being implemented at 6 sites, with several more planned. The initial sites include a variety of academic and community centers, which demonstrate feasibility for implementation in a variety of practice settings. The following table shows aggregate data from two of the initial sites:

Conclusion: The design, deployment and initial use of the ACR RISE network addresses the need for data access across disparate sites using otherwise non-interoperable information systems and creates the opportunity for a robust source of rheumatology clinical data that can be used for multiple purposes.  We believe that such an approach to distributed data sharing in rheumatology will help advance science and improve clinical practice.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/american-college-of-rheumatologys-rheumatology-informatics-system-for-effectiveness-registry-pilot/