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      Creation and implementation of an electronic health record note for quality improvement in pediatric epilepsy: Practical considerations and lessons learned

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          Abstract

          Objective

          To describe the development of the Pediatric Epilepsy Outcome‐Informatics Project (PEOIP) at Alberta Children's Hospital (ACH), which was created to provide standardized, point‐of‐care data entry; near‐time data analysis; and availability of outcome dashboards as a baseline on which to pursue quality improvement.

          Methods

          Stakeholders involved in the PEOIP met weekly to determine the most important outcomes for patients diagnosed with epilepsy, create a standardized electronic note with defined fields (patient demographics, seizure and syndrome type and frequency and specific outcomes‐ seizure type and frequency, adverse effects, emergency department visits, hospitalization, and care pathways for clinical decision support. These were embedded in the electronic health record from which the fields were extracted into a data display platform that provided patient‐ and population‐level dashboards updated every 36 hours. Provider satisfaction and family experience surveys were performed to assess the impact of the standardized electronic note.

          Results

          In the last 5 years, 3,245 unique patients involving 13, 831 encounters had prospective, longitudinal, standardized epilepsy data accrued via point‐of‐care data entry into an electronic note as part of routine clinical care. A provider satisfaction survey of the small number of users involved indicated that the vast majority believed that the note makes documentation more efficient. A family experience survey indicated that being provided with the note was considered “valuable” or “really valuable” by 86% of respondents and facilitated communication with family members, school, and advocacy organizations.

          Significance

          The PEOIP serves as a proof of principle that information obtained as part of routine clinical care can be collected in a prospective, standardized, efficient manner and be used to construct filterable process/outcome dashboards, updated in near time (36 hours). This information will provide the necessary baseline data on which multiple of QI projects to improve meaningful outcomes for children with epilepsy will be based.

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          Most cited references23

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          ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology

          The International League Against Epilepsy (ILAE) Classification of the Epilepsies has been updated to reflect our gain in understanding of the epilepsies and their underlying mechanisms following the major scientific advances that have taken place since the last ratified classification in 1989. As a critical tool for the practicing clinician, epilepsy classification must be relevant and dynamic to changes in thinking, yet robust and translatable to all areas of the globe. Its primary purpose is for diagnosis of patients, but it is also critical for epilepsy research, development of antiepileptic therapies, and communication around the world. The new classification originates from a draft document submitted for public comments in 2013, which was revised to incorporate extensive feedback from the international epilepsy community over several rounds of consultation. It presents three levels, starting with seizure type, where it assumes that the patient is having epileptic seizures as defined by the new 2017 ILAE Seizure Classification. After diagnosis of the seizure type, the next step is diagnosis of epilepsy type, including focal epilepsy, generalized epilepsy, combined generalized, and focal epilepsy, and also an unknown epilepsy group. The third level is that of epilepsy syndrome, where a specific syndromic diagnosis can be made. The new classification incorporates etiology along each stage, emphasizing the need to consider etiology at each step of diagnosis, as it often carries significant treatment implications. Etiology is broken into six subgroups, selected because of their potential therapeutic consequences. New terminology is introduced such as developmental and epileptic encephalopathy. The term benign is replaced by the terms self-limited and pharmacoresponsive, to be used where appropriate. It is hoped that this new framework will assist in improving epilepsy care and research in the 21st century.
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            Operational classification of seizure types by the International League Against Epilepsy: Position Paper of the ILAE Commission for Classification and Terminology

            The International League Against Epilepsy (ILAE) presents a revised operational classification of seizure types. The purpose of such a revision is to recognize that some seizure types can have either a focal or generalized onset, to allow classification when the onset is unobserved, to include some missing seizure types, and to adopt more transparent names. Because current knowledge is insufficient to form a scientifically based classification, the 2017 Classification is operational (practical) and based on the 1981 Classification, extended in 2010. Changes include the following: (1) "partial" becomes "focal"; (2) awareness is used as a classifier of focal seizures; (3) the terms dyscognitive, simple partial, complex partial, psychic, and secondarily generalized are eliminated; (4) new focal seizure types include automatisms, behavior arrest, hyperkinetic, autonomic, cognitive, and emotional; (5) atonic, clonic, epileptic spasms, myoclonic, and tonic seizures can be of either focal or generalized onset; (6) focal to bilateral tonic-clonic seizure replaces secondarily generalized seizure; (7) new generalized seizure types are absence with eyelid myoclonia, myoclonic absence, myoclonic-atonic, myoclonic-tonic-clonic; and (8) seizures of unknown onset may have features that can still be classified. The new classification does not represent a fundamental change, but allows greater flexibility and transparency in naming seizure types.
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              An overview of clinical decision support systems: benefits, risks, and strategies for success

              Computerized clinical decision support systems, or CDSS, represent a paradigm shift in healthcare today. CDSS are used to augment clinicians in their complex decision-making processes. Since their first use in the 1980s, CDSS have seen a rapid evolution. They are now commonly administered through electronic medical records and other computerized clinical workflows, which has been facilitated by increasing global adoption of electronic medical records with advanced capabilities. Despite these advances, there remain unknowns regarding the effect CDSS have on the providers who use them, patient outcomes, and costs. There have been numerous published examples in the past decade(s) of CDSS success stories, but notable setbacks have also shown us that CDSS are not without risks. In this paper, we provide a state-of-the-art overview on the use of clinical decision support systems in medicine, including the different types, current use cases with proven efficacy, common pitfalls, and potential harms. We conclude with evidence-based recommendations for minimizing risk in CDSS design, implementation, evaluation, and maintenance.
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                Author and article information

                Contributors
                buchhalterj@gmail.com
                Journal
                Epilepsia Open
                Epilepsia Open
                10.1002/(ISSN)2470-9239
                EPI4
                Epilepsia Open
                John Wiley and Sons Inc. (Hoboken )
                2470-9239
                10 March 2021
                June 2021
                : 6
                : 2 ( doiID: 10.1002/epi4.v6.2 )
                : 345-358
                Affiliations
                [ 1 ] Department of Pediatrics University of Calgary Calgary AB Canada
                [ 2 ] Department of Clinical Neurosciences University of Calgary Calgary AB Canada
                [ 3 ] Alberta Children’s Hospital Research Institute University of Calgary Calgary AB Canada
                [ 4 ] Hotchkiss Brain Institute University of Calgary Calgary AB Canada
                [ 5 ] Data & Analytics Alberta Health Services Edmonton AB Canada
                [ 6 ] Departments of Pediatrics and Neurosciences University of California San Diego (UCSD) San Diego CA USA
                [ 7 ] Department of Pediatrics and Neurosciences Arnold Palmer Hospital for Children Orland Health Orlando FL USA
                [ 8 ] Faculty of Nursing University of Calgar Calgary AB Canada
                Author notes
                [*] [* ] Correspondence

                Jeffrey R. Buchhalter, 13030 N. 17 th Place, Phoenix, AZ 85022.

                Email: buchhalterj@ 123456gmail.com

                Author information
                https://orcid.org/0000-0002-6807-8328
                https://orcid.org/0000-0002-1112-7002
                https://orcid.org/0000-0001-9886-9924
                https://orcid.org/0000-0001-7197-0221
                Article
                EPI412480
                10.1002/epi4.12480
                8166802
                34033240
                82396bea-8784-4e27-bdc8-ed2dcfd5adf5
                © 2021 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy

                This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.

                History
                : 26 December 2020
                : 05 November 2020
                : 19 February 2021
                Page count
                Figures: 6, Tables: 1, Pages: 14, Words: 7097
                Funding
                Funded by: Alberta Children's Hospital Foundation , open-funder-registry 10.13039/501100003206;
                Funded by: Department of Pediatrics at the University of Calgary
                Funded by: Alberta Children's Hospital Research Institute
                Categories
                Original Article
                Full‐length Original Research
                Custom metadata
                2.0
                June 2021
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.0.2 mode:remove_FC converted:31.05.2021

                electronic health record,epilepsy,ehr,informatics,qi,quality improvement

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