TY - JOUR
T1 - Design and implementation of electronic health record common data elements for pediatric epilepsy
T2 - Foundations for a learning health care system
AU - the Pediatric Epilepsy Learning Healthcare System
AU - Grinspan, Zachary M.
AU - Patel, Anup D.
AU - Shellhaas, Renée A.
AU - Berg, Anne T.
AU - Axeen, Erika T.
AU - Bolton, Jeffrey
AU - Clarke, David F.
AU - Coryell, Jason
AU - Gaillard, William D.
AU - Goodkin, Howard P.
AU - Koh, Sookyong
AU - Kukla, Alison
AU - Mbwana, Juma S.
AU - Morgan, Lindsey A.
AU - Singhal, Nilika S.
AU - Storey, Margaret M.
AU - Yozawitz, Elissa G.
AU - Abend, Nicholas S.
AU - Fitzgerald, Mark P.
AU - Fridinger, Sara E.
AU - Helbig, Ingo
AU - Massey, Shavonne L.
AU - Prelack, Marisa S.
AU - Buchhalter, Jeffrey
N1 - Funding Information:
The authors gratefully acknowledge the support of this project from the BAND Foundation, Pediatric Epilepsy Research Foundation, and Epilepsy Foundation
Publisher Copyright:
© 2020 International League Against Epilepsy
PY - 2021/1
Y1 - 2021/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85100069586&partnerID=8YFLogxK
U2 - 10.1111/epi.16733
DO - 10.1111/epi.16733
M3 - Article
C2 - 33368200
AN - SCOPUS:85100069586
SN - 0013-9580
VL - 62
SP - 198
EP - 216
JO - Epilepsia
JF - Epilepsia
IS - 1
ER -