ArticleEpilepsy research2022
A replicable, open-source, data integration method to support national practice-based research & quality improvement systems.
Article in Epilepsy research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
5 citing papers in PubMed, 8 citations in OpenAlex.
- Identification of patients with epilepsy using automated electronic health records phenotyping.Epilepsia · 2023Trial
- Review
- Study protocol for a prospective, cluster randomised control, hybrid type 1 effectiveness-implementation trial to evaluate the Reduction Of Seizures through Education and Support: the ROSES study.BMJ neurology open · 2026Article
- A research roadmap for SCN8A-related disorders: addressing knowledge gaps and aligning research priorities across stakeholders.Orphanet journal of rare diseases · 2025Article
- Extracting seizure control metrics from clinic notes of patients with epilepsy: A natural language processing approach.Epilepsy research · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors at 4 institutions in 2 countries.
Funding
Abstract
objectivesThe Epilepsy Learning Healthcare System (ELHS) was created in 2018 to address measurable improvements in outcomes for people with epilepsy. However, fragmentation of data systems has been a major barrier for reporting and participation. In this study, we aimed to test the feasibility of an open-source Data Integration (DI) method that connects real-life clinical data to national research and quality improvement (QI) systems.
methodsThe ELHS case report forms were programmed as EPIC SmartPhrases at Mass General Brigham (MGB) in December 2018 and subsequently as EPIC SmartForms in June 2021 to collect actionable, standardized, structured epilepsy data in the electronic health record (EHR) for subsequent pull into the external national registry of the ELHS. Following the QI methodology in the Chronic Care Model, 39 providers, epileptologists and neurologists, incorporated the ELHS SmartPhrase into their clinical workflow, focusing on collecting diagnosis of epilepsy, seizure type according to the International League Against Epilepsy, seizure frequency, date of last seizure, medication adherence and side effects. The collected data was stored in the Enterprise Data Warehouse (EDW) without integration with external systems. We developed and validated a DI method that extracted the data from EDW using structured query language and later preprocessed using text mining. We used the ELHS data dictionary to match fields in the preprocessed notes to obtain the final structured dataset with seizure control information. For illustration, we described the data curated from the care period of 12/2018-12/2021.
resultsThe cohort comprised a total of 1806 patients with a mean age of 43 years old (SD: 17.0), where 57% were female, 80% were white, and 84% were non-Hispanic/Latino. Using our DI method, we automated the data mining, preprocessing, and exporting of the structured dataset into a local database, to be weekly accessible to clinicians and quality improvers. During the period of SmartPhrase implementation, there were 5168 clinic visits logged by providers documenting each patient's seizure type and frequency. During this period, providers documented 59% patients having focal seizures, 35% having generalized seizures and 6% patients having another type. Of the cohort, 45% patients had private insurance. The resulting structured dataset was bulk uploaded via web interface into the external national registry of the ELHS.
conclusionsStructured data can be feasibly extracted from text notes of epilepsy patients for weekly reporting to a national learning healthcare system.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.