Design and Implementation of Electronic Health Record Common Data Elements for Pediatric Epilepsy: Foundations for a Learning Healthcare System

• Type of Material: Article
• Authors: Zachary M. Grinspan, Weill Cornell Medicine; Anup D. Patel, Nationwide Children's Hospital; Renée A Shellhaas, University of Michigan; Anne T. Berg, Northwestern Feinberg School of Medicine; Erika T. Axeen, University of Virginia; Jeffrey Bolton, Harvard Medical School; David F. Clarke, University of Texas at Austin; Jason Coryell, Oregon health Sciences University; William D. gaillard, The George Washington University; Howard P. Goodkin, University of Virginia; Sookyong Koh, Emory University; Alison Kuklia, Epilepsy Foundation; Juma S. Mbwana, The George Washington University; Lindsey A. Morgan, Epilepsy Foundation; Nilika S. Singhal, University of Washington; Margaret M. Storey, DePaul University; Elissa G. Yozawitz, Albert Einstein College of Medicine; Nicholas S. Abend, University of Pennsylvania; Mark P. Fitzgerald, University of Pennsylvania; Sara E. Fridinger, University of Pennsylvania; Ingo Helbig, University of Pennsylvania; Shavonne L. Massey, University of Pennsylvania; Marisa S. Prelack, University of Pennsylvania; Jeffrey Buchhalter, St. Joseph's Hospital
• Language: English
• Date: 2020-12-24
• Publisher: John Wiley and Sons
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2020 International League Against Epilepsy
• Final Published Version (URL): https://doi.org/10.1111%2Fepi.16733
• Title of Journal or Parent Work: Epilepsia
• Volume: 62
• Issue: 1
• Start Page: 198
• End Page: 216
• Grant/Funding Information: The authors gratefully acknowledge the support of this project from the BAND Foundation, Pediatric Epilepsy Research Foundation, and the Epilepsy Foundation.
• Keywords: Informatics; Pediatrics; Epilepsy; Common Data Elements; Electronic Health Records
• Research Categories: Health Sciences, Radiology

Abstract

Objective. Common data elements (CDEs) are standardized questions and answer choices that allow aggregation, analysis, and comparison of observations from multiple sources. Clinical CDEs are foundational for learning healthcare systems, a data-driven approach to healthcare focused on continuous improvement of outcomes. We aimed to create clinical CDEs for pediatric epilepsy. Methods. A multiple stakeholder group (clinicians, researchers, parents, caregivers, advocates, and electronic health record (EHR) vendors) developed clinical CDEs for routine care of children with epilepsy. Initial drafts drew from clinical epilepsy note templates, CDEs created for clinical research, items in existing registries, consensus documents and guidelines, quality metrics, and outcomes needed for demonstration projects. The CDEs were refined through discussion and field testing. We describe the development process, rationale for CDE selection, findings from piloting, and the CDEs themselves. We also describe early implementation, including experience with EHR systems and compatibility with the International League Against Epilepsy (ILAE) classification of seizure types. Results. CDEs were drafted in August 2017 and finalized in January 2020. Prioritized outcomes included seizure control and seizure freedom, American Academy of Neurology quality measures, presence of common comorbidities, and quality of life. The CDEs were piloted at 224 visits at ten centers. The final CDEs included 36 questions in 9 sections: diagnosis (1 question), seizure frequency (9), quality of life (2), epilepsy history (6), etiology (8), comorbidities (2), treatment (2), process measures (5), and longitudinal history notes (1). Seizures are categorized as generalized tonic-clonic (regardless of onset), motor, non-motor, and epileptic spasms. Focality is collected as epilepsy type, rather than seizure type. Seizure frequency is measured in nine levels (all used during piloting). The CDEs were implemented in 3 vendor systems. Early clinical adoption included 1294 encounters at one center. Conclusions. We created, piloted, refined, finalized, and implemented a novel set of clinical CDEs for pediatric epilepsy.