Managing information well: Toward an ontology-driven informatics platform for data sharing and secondary use in epilepsy self-management research centers

Health Informatics Journal
Satya S SahooMartha Sajatovic

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.

References

Jul 6, 2006·Der Nervenarzt·C KellinghausUNKNOWN ILAE Task Force for Epilepsy Classification
Aug 11, 2006·Briefings in Bioinformatics·Olivier Bodenreider, Robert Stevens
Nov 18, 2008·Epilepsy & Behavior : E&B·Colleen DiIorioFrances McCarty
Jul 23, 2009·Methods in Molecular Biology·David B Keator
Jul 9, 2010·Epilepsy & Behavior : E&B·Paul CiechanowskiFrank Gilliam
Sep 21, 2010·Epilepsy & Behavior : E&B·Nancy J ThompsonMichael T Compton
Sep 28, 2010·Epilepsy & Behavior : E&B·Colleen K DiIorioUNKNOWN Managing Epilepsy Well Network
Apr 12, 2011·Neuroinformatics·Syam GaddeUNKNOWN FBIRN, MBIRN, BIRN-CC
Apr 26, 2011·Journal of the American Medical Informatics Association : JAMIA·Karl G HelmerUNKNOWN Biomedical Informatics Research Network
Aug 30, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Richard C GershonDavid Cella
Oct 18, 2011·Epilepsia·David J ThurmanUNKNOWN ILAE Commission on Epidemiology
Jan 4, 2012·Archives of General Psychiatry·Paul E HoltzheimerHelen S Mayberg
Nov 6, 2012·Seizure : the Journal of the British Epilepsy Association·Mansooreh AliasgharpourHamid Haghani
May 21, 2013·Journal of the American Medical Informatics Association : JAMIA·Satya S SahooGuo-Qiang Zhang
Aug 21, 2013·Epilepsy & Behavior : E&B·Ross ShegogUkwuoma O Ilozumba
Dec 12, 2013·Journal of the American Medical Informatics Association : JAMIA·Satya S SahooGuo-Qiang Zhang

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Citations

Aug 31, 2016·International Journal of Medical Informatics·Satya S SahooMartha Sajatovic

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Software Mentioned

MEW modality Epilepsy Data Capture and Integration System ( ME...
EpSO
REDCap ( Research Electronic Data Capture )
QOL
MEW
Tools
MEDCIS
Cloudwave
Epilepsy Data Extraction and Annotation system
Excel

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