{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,18]],"date-time":"2026-01-18T03:49:17Z","timestamp":1768708157939,"version":"3.49.0"},"reference-count":47,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2016,7,26]],"date-time":"2016-07-26T00:00:00Z","timestamp":1469491200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Health Informatics J"],"published-print":{"date-parts":[[2016,9]]},"abstract":"<jats:p> 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. <\/jats:p>","DOI":"10.1177\/1460458215572924","type":"journal-article","created":{"date-parts":[[2015,3,14]],"date-time":"2015-03-14T01:37:14Z","timestamp":1426297034000},"page":"548-561","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":16,"title":["Managing information well: Toward an ontology-driven informatics platform for data sharing and secondary use in epilepsy self-management research centers"],"prefix":"10.1177","volume":"22","author":[{"given":"Satya S","family":"Sahoo","sequence":"first","affiliation":[{"name":"Case Western Reserve University, USA"}]},{"given":"Guo-Qiang","family":"Zhang","sequence":"additional","affiliation":[{"name":"Case Western Reserve University, USA"},{"name":"Case Western Reserve University, USA"}]},{"given":"Yvan","family":"Bamps","sequence":"additional","affiliation":[{"name":"Emory University, USA"},{"name":"Case Western Reserve University, USA"}]},{"given":"Robert","family":"Fraser","sequence":"additional","affiliation":[{"name":"University of Washington, USA"},{"name":"Case Western Reserve University, USA"}]},{"given":"Shelley","family":"Stoll","sequence":"additional","affiliation":[{"name":"University of Michigan, USA"},{"name":"Case Western Reserve University, USA"}]},{"given":"Samden D","family":"Lhatoo","sequence":"additional","affiliation":[{"name":"Case Western Reserve University, USA"}]},{"given":"Curtis","family":"Tatsuoka","sequence":"additional","affiliation":[{"name":"Case Western Reserve University, USA"}]},{"given":"Johnny","family":"Sams","sequence":"additional","affiliation":[{"name":"Case Western Reserve University, USA"}]},{"given":"Elisabeth","family":"Welter","sequence":"additional","affiliation":[{"name":"Case Western Reserve University, USA"}]},{"given":"Martha","family":"Sajatovic","sequence":"additional","affiliation":[{"name":"Case Western Reserve University, USA"}]}],"member":"179","published-online":{"date-parts":[[2016,7,26]]},"reference":[{"key":"bibr1-1460458215572924","unstructured":"Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance System (BRFSS)\u20142013 Questionnaire: Section 8, http:\/\/www.cdc.gov\/brfss\/about\/brfss_today.htm (accessed 20 August 2014)."},{"key":"bibr2-1460458215572924","volume-title":"EPILEPSY across the SPECTRUM. Promoting health and understanding","author":"Committee on the Public Health Dimensions of the Epilepsies","year":"2012"},{"key":"bibr3-1460458215572924","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1212\/WNL.43.9.1856","volume":"43","author":"Fisher RS.","year":"1993","journal-title":"Neurology"},{"key":"bibr4-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2007.01005.x"},{"key":"bibr5-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1157.2000.tb00166.x"},{"key":"bibr6-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2011.01.017"},{"key":"bibr7-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.seizure.2012.10.005"},{"key":"bibr8-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2010.06.003"},{"issue":"8","key":"bibr9-1460458215572924","first-page":"1503","volume":"72","author":"Coleman MT","year":"2005","journal-title":"Am Fam Physician"},{"issue":"1","key":"bibr10-1460458215572924","first-page":"A28","volume":"6","author":"Dilorio C","year":"2009","journal-title":"Prev Chronic Dis"},{"key":"bibr11-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2008.10.016"},{"key":"bibr12-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2010.07.031"},{"key":"bibr13-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1001\/archgenpsychiatry.2011.1456"},{"key":"bibr14-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2010.07.027"},{"issue":"3","key":"bibr15-1460458215572924","doi-asserted-by":"crossref","first-page":"520","DOI":"10.1111\/j.1365-2753.2009.01153.x","volume":"16","author":"Thompson A","year":"2010","journal-title":"J Eval Clin Pract"},{"key":"bibr16-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2013.07.002"},{"key":"bibr17-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-11-38"},{"key":"bibr18-1460458215572924","unstructured":"Patient Reported Outcomes Measurement Information System (PROMIS), http:\/\/www.nihpromis.org\/ (accessed 20 August 2014)."},{"key":"bibr19-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-59745-524-4_1"},{"key":"bibr20-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1136\/amiajnl-2010-000032"},{"key":"bibr21-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1007\/s12021-011-9119-9"},{"key":"bibr22-1460458215572924","author":"Holdren JP","year":"2010","journal-title":"Executive Office of the President, Washington, DC"},{"key":"bibr23-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1145\/96602.96604"},{"key":"bibr24-1460458215572924","volume-title":"Principles of data integration","author":"Doan A","year":"2012"},{"key":"bibr25-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1093\/bib\/bbl027"},{"key":"bibr26-1460458215572924","unstructured":"SNOMED Clinical Terms: The International Health Terminology Standards Development Organisation, http:\/\/www.nlm.nih.gov\/research\/umls\/Snomed\/snomed_main.html (accessed 20 August 2014)."},{"key":"bibr27-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1157.1998.tb01278.x"},{"key":"bibr28-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1157.1996.tb00612.x"},{"key":"bibr29-1460458215572924","unstructured":"National Institute of Neurological Disorders and Stroke (NINDS). Measuring quality of life in neurological disorders. Final report of the Neuro-QOL study, http:\/\/www.neuroqol.org\/Resources\/Resources%20documents\/NeuroQOL-Final%20report-2013.pdf (accessed 20 August 2014)."},{"key":"bibr30-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-9958-8"},{"key":"bibr31-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"bibr32-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/epi.12211"},{"key":"bibr33-1460458215572924","volume-title":"American Medical Informatics Association (AMIA) annual symposium","author":"Zhang GQ"},{"key":"bibr34-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1136\/amiajnl-2013-001696"},{"key":"bibr35-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03121.x"},{"key":"bibr36-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03018.x"},{"key":"bibr37-1460458215572924","doi-asserted-by":"crossref","first-page":"308","DOI":"10.1684\/j.1950-6945.2005.tb00132.x","volume":"7","author":"Loddenkemper T","year":"2005","journal-title":"Epileptic Disord"},{"key":"bibr38-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1007\/s00115-006-2123-x"},{"key":"bibr39-1460458215572924","volume-title":"AMIA annual symposium","author":"Bodenreider O","year":"2129"},{"key":"bibr40-1460458215572924","volume-title":"The American Medical Informatics Association (AMIA) annual symposium","author":"Sahoo SS"},{"key":"bibr41-1460458215572924","volume-title":"The American Medical Informatics Association (AMIA) annual symposium","author":"Cui L"},{"key":"bibr42-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1136\/amiajnl-2013-002156"},{"key":"bibr43-1460458215572924","volume-title":"Proceedings of the 32nd international conference on Very Large Data Bases (VLDB)","author":"Halevy A"},{"key":"bibr44-1460458215572924","author":"Lebo T","year":"2013","journal-title":"World Wide Web consortium W3C Recommendation"},{"key":"bibr45-1460458215572924","doi-asserted-by":"publisher","DOI":"10.1145\/514183.514185"},{"key":"bibr46-1460458215572924","first-page":"76","volume-title":"AMIA clinical research informatics summit","author":"Zhang GQ"},{"key":"bibr47-1460458215572924","unstructured":"HBase: The Hadoop database, http:\/\/hbase.apache.org\/"}],"container-title":["Health Informatics Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1460458215572924","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1460458215572924","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1460458215572924","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,3]],"date-time":"2025-03-03T16:38:24Z","timestamp":1741019904000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1460458215572924"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,7,26]]},"references-count":47,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2016,9]]}},"alternative-id":["10.1177\/1460458215572924"],"URL":"https:\/\/doi.org\/10.1177\/1460458215572924","relation":{},"ISSN":["1460-4582","1741-2811"],"issn-type":[{"value":"1460-4582","type":"print"},{"value":"1741-2811","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,7,26]]}}}