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

Zachary M Grinspan; Anup D Patel; Renée A Shellhaas; Anne T Berg; Erika T Axeen; Jeffrey Bolton; David F Clarke; Jason Coryell; William D Gaillard; Howard P Goodkin; Sookyong Koh; Alison Kukla; Juma S Mbwana; Lindsey A Morgan; Nilika S Singhal; Margaret M Storey; Elissa G Yozawitz; Nicholas S Abend; Mark P Fitzgerald; Sara E Fridinger; Ingo Helbig; Shavonne L Massey; Marisa S Prelack; Jeffrey Buchhalter; Pediatric Epilepsy Learning Healthcare System

doi:10.1111/epi.16733

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

Epilepsia. 2021 Jan;62(1):198-216. doi: 10.1111/epi.16733. Epub 2020 Dec 24.

Authors

Zachary M Grinspan¹, Anup D Patel², Renée A Shellhaas³, Anne T Berg^{4

5}, Erika T Axeen⁶, Jeffrey Bolton^{7

8}, David F Clarke⁹, Jason Coryell¹⁰, William D Gaillard¹¹, Howard P Goodkin⁶, Sookyong Koh¹², Alison Kukla¹³, Juma S Mbwana¹¹, Lindsey A Morgan^{14

15}, Nilika S Singhal¹⁶, Margaret M Storey¹⁷, Elissa G Yozawitz¹⁸, Nicholas S Abend^{19

20}, Mark P Fitzgerald^{19

20}, Sara E Fridinger^{19

20}, Ingo Helbig^{19

20

21

22}, Shavonne L Massey^{19

20}, Marisa S Prelack^{19

20}, Jeffrey Buchhalter²³; Pediatric Epilepsy Learning Healthcare System

Affiliations

¹ Departments of Population Health Sciences and Pediatrics, Weill Cornell Medicine, New York, NY, USA.
² Division of Neurology, Nationwide Children's Hospital, Columbus, OH, USA.
³ Department of Pediatrics (Pediatric Neurology), Michigan Medicine, University of Michigan, Ann Arbor, MI, USA.
⁴ Division of Neurology, Epilepsy Center, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
⁵ Department of Pediatrics, Northwestern Feinberg School of Medicine, Chicago, IL, USA.
⁶ Department of Neurology, University of Virginia, Charlottesville, VA, USA.
⁷ Harvard Medical School, Boston, MA, USA.
⁸ Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Boston, MA, USA.
⁹ Division of Pediatric Neurology, Department of Neurology, Dell Medical School, University of Texas at Austin, Austin, TX, USA.
¹⁰ Departments of Pediatrics and Neurology, Oregon Health and Sciences University, Portland, OR, USA.
¹¹ Department of Neurology, Children's National Health System and School of Medicine, George Washington University, Washington, DC, USA.
¹² Department of Pediatrics, Emory Children's Center, Emory University School of Medicine, Atlanta, GA, USA.
¹³ Epilepsy Foundation, Landover, MD, USA.
¹⁴ Center for Integrative Brain Research, Seattle Children's Research Institute, Seattle, WA, USA.
¹⁵ Departments of Pediatrics and Neurology, Seattle Children's Hospital, University of Washington, Washington, DC, USA.
¹⁶ Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, CA, USA.
¹⁷ Department of History, College of Liberal Arts and Social Sciences, DePaul University, Chicago, IL, USA.
¹⁸ Saul Korey Department of Neurology, Montefiore Medical Center and Albert Einstein College of Medicine, Bronx, NY, USA.
¹⁹ Division of Neurology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
²⁰ Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
²¹ Epilepsy NeuroGenetics Initiative, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
²² Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
²³ Department of Neurology, St Joseph's Hospital and Medical Center, Phoenix, AZ, USA.

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Common Data Elements*
Comparative Effectiveness Research
Electronic Health Records*
Epidemiological Monitoring
Epilepsy* / diagnosis
Epilepsy* / physiopathology
Epilepsy* / therapy
Health Services Research
Humans
Implementation Science
Neurology*
Outcome and Process Assessment, Health Care
Pediatrics*
Quality Improvement

Abstract

Publication types

MeSH terms

Grants and funding