Common data elements for epilepsy mobile health systems

Epilepsia. 2018 May;59(5):1020-1026. doi: 10.1111/epi.14066. Epub 2018 Mar 31.

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.

Keywords: common data elements; devices; epilepsy; mHealth; seizure diary; standards.

Publication types

  • Consensus Development Conference

MeSH terms

  • Common Data Elements / standards*
  • Epilepsy*
  • Humans
  • Neurology / standards*
  • Telemedicine / standards*
  • Terminology as Topic*