Evaluation of PCORnet as an Approach to Accessing Electronic Health Record (EHR) Data for Cleft Outcomes Research: Advantages and Limitations.

Objective: To evaluate the feasibility of using the National Patient-Centered Clinical Research Network (PCORnet^®) as a source of electronic health record (EHR) data for cleft outcomes research. Design: Exploratory retrospective analysis of multi-year, administrative and clinical, structured data stored in PCORnet. Setting: Academic institution with an ACPA-approved cleft and craniofacial team. Patients/Participants: Encounter-level data pertaining to patients with orofacial clefts treated at this center between 2010 and 2018. Outcome Measures: (1) Ability of PCORnet to report metrics such as the following: number of new and returning patients per year; demographics; phenotype; procedures; readmission or reoperation within 30 days; etc. (2) Accuracy of selected metrics, compared with manual chart review. Results: PCORnet is useful for the calculation of simple process metrics such as patient demographics, phenotype mix, case mix, and number of readmissions. However, as it lacks access to clinical notes, PCORnet alone cannot provide more detailed information. Phenotypic classification (based on ICD codes) and procedural description (based on CPT^®) are subject to inaccuracy. A 1-2 year delay in data upload to PCORnet may be rate-limiting for certain applications. Multi-institutional queries were feasible. Conclusions: PCORnet does not include all necessary data elements from the EHR. While very convenient for the tabulation of simple process metrics, especially from multiple institutions, supplemental data collection will be required for meaningful cleft outcomes research. Cleft teams whose institutions participate in PCORnet might choose to store the supplemental data as "sidecars" alongside the standard PCORnet database tables, which would allow for future PCORnet queries to be more informative and impactful.