title: Managing information well: Toward an ontology-driven informatics platform for data sharing and secondary use in epilepsy self-management research centers.
abstract: Epilepsy is a chronic neurological condition that requires active self-management to reduce personal and population burden. The Managing Epilepsy Well Network, funded by the US Centers for Disease Control and Prevention, conducts research on epilepsy self-management. There is an urgent need to develop an integrated informatics platform to maximize the secondary use of existing Managing Epilepsy Well Network data. We have implemented multiple steps to develop an informatics platform, including: (a) a survey of existing outcome data, (b) identification of common data elements, and (c) an integrated database using an epilepsy domain ontology to reconcile data heterogeneity. The informatics platform enables assessment of epilepsy self-management samples by site and in aggregate to support data interpretations for clinical care and ongoing epilepsy self-management research. The Managing Epilepsy Well informatics platform is expected to help advance epilepsy self-management, improve health outcomes, and has potential application in other thematic research networks.
authors.affiliation: Case Western Reserve University, USAEmory University, USAUniversity of Washington, USAUniversity of Michigan, USACase Western Reserve University, USA.
authors.forename: Satya S
authors.initials: SS
authors.lastname: Sahoo
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Guo-Qiang
authors.initials: GQ
authors.lastname: Zhang
authors.affiliation: Emory University, USA.
authors.forename: Yvan
authors.initials: Y
authors.lastname: Bamps
authors.affiliation: University of Washington, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Fraser
authors.affiliation: University of Michigan, USA.
authors.forename: Shelley
authors.initials: S
authors.lastname: Stoll
authors.affiliation: Case Western Reserve University, USAEmory University, USAUniversity of Washington, USAUniversity of Michigan, USACase Western Reserve University, USA.
authors.forename: Samden D
authors.initials: SD
authors.lastname: Lhatoo
authors.affiliation: Case Western Reserve University, USAEmory University, USAUniversity of Washington, USAUniversity of Michigan, USACase Western Reserve University, USA.
authors.forename: Curtis
authors.initials: C
authors.lastname: Tatsuoka
authors.affiliation: Case Western Reserve University, USAEmory University, USAUniversity of Washington, USAUniversity of Michigan, USACase Western Reserve University, USA.
authors.forename: Johnny
authors.initials: J
authors.lastname: Sams
authors.affiliation: Case Western Reserve University, USAEmory University, USAUniversity of Washington, USAUniversity of Michigan, USACase Western Reserve University, USA.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Welter
authors.affiliation: Case Western Reserve University, USAEmory University, USAUniversity of Washington, USAUniversity of Michigan, USACase Western Reserve University, USA Martha.Sajatovic@UHhospitals.org.
authors.forename: Martha
authors.initials: M
authors.lastname: Sajatovic
mesh_terms: D016208:Databases, Factual / Q000706:statistics & numerical data*; D019468:Disease Management; D004827:Epilepsy / Q000628:therapy*; D006302:Health Services Research; D006801:Humans; D033181:Information Dissemination; D019451:Information Management; D008490:Medical Informatics; D012648:Self Care
keywords: epilepsy; informatics; seizures; self-management