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Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system

dc.contributor.authorGrinspan, Zachary M.
dc.contributor.authorPatel, Anup D.
dc.contributor.authorShellhaas, Renée A.
dc.contributor.authorBerg, Anne T.
dc.contributor.authorAxeen, Erika T.
dc.contributor.authorBolton, Jeffrey
dc.contributor.authorClarke, David F.
dc.contributor.authorCoryell, Jason
dc.contributor.authorGaillard, William D.
dc.contributor.authorGoodkin, Howard P.
dc.contributor.authorKoh, Sookyong
dc.contributor.authorKukla, Alison
dc.contributor.authorMbwana, Juma S.
dc.contributor.authorMorgan, Lindsey A.
dc.contributor.authorSinghal, Nilika S.
dc.contributor.authorStorey, Margaret M.
dc.contributor.authorYozawitz, Elissa G.
dc.contributor.authorAbend, Nicholas S.
dc.contributor.authorFitzgerald, Mark P.
dc.contributor.authorFridinger, Sara E.
dc.contributor.authorHelbig, Ingo
dc.contributor.authorMassey, Shavonne L.
dc.contributor.authorPrelack, Marisa S.
dc.contributor.authorBuchhalter, Jeffrey
dc.date.accessioned2021-02-04T21:48:31Z
dc.date.available2022-02-04 16:48:30en
dc.date.available2021-02-04T21:48:31Z
dc.date.issued2021-01
dc.identifier.citationGrinspan, 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 (2021). "Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system." Epilepsia (1): 198-216.
dc.identifier.issn0013-9580
dc.identifier.issn1528-1167
dc.identifier.urihttps://hdl.handle.net/2027.42/166156
dc.description.abstractObjectiveCommon 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.MethodsA 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.ResultsCommon 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.SignificanceWe created, piloted, refined, finalized, and implemented a novel set of clinical CDEs for pediatric epilepsy.
dc.publisherNational Academies Press
dc.publisherWiley Periodicals, Inc.
dc.titleDesign and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system
dc.typeArticle
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelMedicine (General)
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttp://deepblue.lib.umich.edu/bitstream/2027.42/166156/1/epi16733.pdf
dc.description.bitstreamurlhttp://deepblue.lib.umich.edu/bitstream/2027.42/166156/2/epi16733_am.pdf
dc.identifier.doi10.1111/epi.16733
dc.identifier.doihttps://dx.doi.org/10.7302/79
dc.identifier.sourceEpilepsia
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dc.working.doi10.7302/79en
dc.owningcollnameInterdisciplinary and Peer-Reviewed


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