Common data elements for epilepsy mobile health systems

Daniel M. Goldenholz, Robert Moss, David A. Jost, Nathan E. Crone, Gregory Krauss, Rosalind Picard, Chiara Caborni, Jose E. Cavazos, John Hixson, Tobias Loddenkemper, Tracy Dixon Salazar, Laura Lubbers, Lauren C. Harte-Hargrove, Vicky Whittemore, Jonas Duun-Henriksen, Eric Dolan, Nitish Kasturia, Mark Oberemk, Mark J. Cook, Mark LehmkuhleMichael R. Sperling, Patricia O. Shafer

Research output: Contribution to journalArticle

6 Scopus citations

Abstract

Objective: Common data elements (CDEs) are currently unavailable for mobile health (mHealth) in epilepsy devices and related applications. As a result, despite expansive growth of new digital services for people with epilepsy, information collected is often not interoperable or directly comparable. We aim to correct this problem through development of industry-wide standards for mHealth epilepsy data. Methods: Using a group of stakeholders from industry, academia, and patient advocacy organizations, we offer a consensus statement for the elements that may facilitate communication among different systems. Results: A consensus statement is presented for epilepsy mHealth CDEs. Significance: Although it is not exclusive, we believe that the use of a minimal common information denominator, specifically these CDEs, will promote innovation, accelerate scientific discovery, and enhance clinical usage across applications and devices in the epilepsy mHealth space. As a consequence, people with epilepsy will have greater flexibility and ultimately more powerful tools to improve their lives.

Original languageEnglish (US)
Pages (from-to)1020-1026
Number of pages7
JournalEpilepsia
Volume59
Issue number5
DOIs
StatePublished - May 2018

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Keywords

  • common data elements
  • devices
  • epilepsy
  • mHealth
  • seizure diary
  • standards

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

Cite this

Goldenholz, D. M., Moss, R., Jost, D. A., Crone, N. E., Krauss, G., Picard, R., Caborni, C., Cavazos, J. E., Hixson, J., Loddenkemper, T., Salazar, T. D., Lubbers, L., Harte-Hargrove, L. C., Whittemore, V., Duun-Henriksen, J., Dolan, E., Kasturia, N., Oberemk, M., Cook, M. J., ... Shafer, P. O. (2018). Common data elements for epilepsy mobile health systems. Epilepsia, 59(5), 1020-1026. https://doi.org/10.1111/epi.14066