Goldenholz DM, Moss R, Jost DA, Crone NE, Krauss G, Picard R, Caborni C, Cavazos JE, Hixson J, Loddenkemper T, Salazar TD, Lubbers L, Harte-Hargrove LC, Whittemore V, Duun-Henriksen J, Dolan E, Kasturia N, Oberemk M, Cook MJ, Lehmkuhle M, Sperling MR, Shafer PO. 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 (CDE) are currently unavailable for mobile health (mHealth) in epilepsy devices and related applications. As a result, despite expansive growth of new digital service 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 CDE.

SIGNIFICANCE

While 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.