Background/Purpose:

Medical institutions are adopting electronic health records (EHR) in accordance with Meaningful Use making it possible to standardize and capture patient data for registries that serve Learning Health Systems (LHS). LHS leverage clinical data to generate new evidence and knowledge improving clinical practice; ensuring quality, safety, and value; and driving innovation in health care.

The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is an 18 center learning network designed to improve the outcomes of rheumatic disease care. Teams collect and analyze point of care data on process and outcomes that guide improvement activities. Currently for most centers, data collection and entry is manual and duplicative: (1) patients and providers fill out paper forms; (2) providers document clinical visits in multiple areas within the EHR; (3) staff complete paper case report forms (CRF); and (4) staff enter data from CRFs into the registry database. This time and resource consuming process increases the risk for data entry errors, is very expensive, and delays optimal evidence based care.

We describe a PR-COIN and EHR vendor (Epic Systems Corporation) collaboration to design, build, and implement a technical architecture to make clinical documentation efficient, standardize data collection, enhance data display and access, to improve patient care and facilitate research.

Methods:

Development entailed direct interaction of the EHR vendor with three institutions’ information systems departments. Over a course of two years, twice monthly meetings occurred to discuss collection form and note template builds, data element standardization, and process workflows. Our goals were: (1) to support a “data-in-once” strategy for registry data collection while integrating data capture into routine patient clinical visit documentation; (2) to develop automated pre-visit planning reports within the EHR that support evidence based chronic care patient management.

Results:

Components of the “data-in-once” build included: (1) point of care seamless discrete standardized data exchange between the clinical documentation and PR-COIN registry data collection elements within the EHR; (2) capability for ongoing electronic transfer of the EHR PR-COIN registry data to the external PR-COIN registry. Automated pre-visit planning reports are strategically localized in the EHR for ease of access and use. Three institutions are piloting system implementation with subsequent roll-out planned to other users in the learning network.

Conclusion:

Learning health systems can be the foundation for improved quality of clinical care and patient outcomes. Successful implementation and utilization of registries rely on integration into the clinical process and a coordinated effort to analyze workflows and define build requirements. Using the EHR platform to obtain registry data directly from the patient care process, we developed a method to efficiently and unobtrusively collect patient data. This effectively accelerates the rate of useful data accumulation for analysis and provides visually enhanced presentation of clinically meaningful data to users.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-and-implementation-of-a-data-in-once-model-for-a-pediatric-rheumatology-learning-health-system-2/