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Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system
Author(s) -
Grinspan Zachary M.,
Patel Anup D.,
Shellhaas Renée A.,
Berg Anne T.,
Axeen Erika T.,
Bolton Jeffrey,
Clarke David F.,
Coryell Jason,
Gaillard William D.,
Goodkin Howard P.,
Koh Sookyong,
Kukla Alison,
Mbwana Juma S.,
Morgan Lindsey A.,
Singhal Nilika S.,
Storey Margaret M.,
Yozawitz Elissa G.,
Abend Nicholas S.,
Fitzgerald Mark P.,
Fridinger Sara E.,
Helbig Ingo,
Massey Shavonne L.,
Prelack Marisa S.,
Buchhalter Jeffrey
Publication year - 2021
Publication title -
epilepsia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.687
H-Index - 191
eISSN - 1528-1167
pISSN - 0013-9580
DOI - 10.1111/epi.16733
Subject(s) - epilepsy , electronic health record , medicine , stakeholder , health care , quality management , family medicine , psychiatry , public relations , political science , management system , management , economics , economic growth
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 health care systems, a data‐driven approach to health care 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 classification of seizure types. Results Common data elements were drafted in August 2017 and finalized in January 2020. Prioritized outcomes included seizure control, seizure freedom, American Academy of Neurology quality measures, presence of common comorbidities, and quality of life. The CDEs were piloted at 224 visits at 10 centers. The final CDEs included 36 questions in nine sections (number of questions): diagnosis (1), 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, nonmotor, 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 three vendor systems. Early clinical adoption included 1294 encounters at one center. Significance We created, piloted, refined, finalized, and implemented a novel set of clinical CDEs for pediatric epilepsy.