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 Lehmkuhle; Michael R. Sperling; Patricia O. Shafer

doi:10.1111/epi.14066

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 journal › Article › peer-review

28 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 language	English (US)
Pages (from-to)	1020-1026
Number of pages	7
Journal	Epilepsia
Volume	59
Issue number	5
DOIs	https://doi.org/10.1111/epi.14066
State	Published - May 2018

Keywords

common data elements
devices
epilepsy
mHealth
seizure diary
standards

ASJC Scopus subject areas

Clinical Neurology
Neurology

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10.1111/epi.14066

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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

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 2018, 'Common data elements for epilepsy mobile health systems', Epilepsia, vol. 59, no. 5, pp. 1020-1026. https://doi.org/10.1111/epi.14066

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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.",

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

note = "Publisher Copyright: Wiley Periodicals, Inc. {\textcopyright} 2018 International League Against Epilepsy",

year = "2018",

month = may,

doi = "10.1111/epi.14066",

language = "English (US)",

volume = "59",

pages = "1020--1026",

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AU - Goldenholz, Daniel M.

AU - Moss, Robert

AU - Jost, David A.

AU - Crone, Nathan E.

AU - Krauss, Gregory

AU - Picard, Rosalind

AU - Caborni, Chiara

AU - Cavazos, Jose E.

AU - Hixson, John

AU - Loddenkemper, Tobias

AU - Salazar, Tracy Dixon

AU - Lubbers, Laura

AU - Harte-Hargrove, Lauren C.

AU - Whittemore, Vicky

AU - Duun-Henriksen, Jonas

AU - Dolan, Eric

AU - Kasturia, Nitish

AU - Oberemk, Mark

AU - Cook, Mark J.

AU - Lehmkuhle, Mark

AU - Sperling, Michael R.

AU - Shafer, Patricia O.

PY - 2018/5

Y1 - 2018/5

N2 - 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.

AB - 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.

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Common data elements for epilepsy mobile health systems

Abstract

Keywords

ASJC Scopus subject areas

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