Big data research is everyone's research-Making epilepsy data science accessible to the global community: Report of the ILAE big data commission

Colin B Josephson; Eleonora Aronica; Sandor Beniczky; Danielle Boyce; Gianpiero Cavalleri; Spiros Denaxas; Jacqueline French; Lara Jehi; Hyunyong Koh; Patrick Kwan; Carrie McDonald; James W Mitchell; Stefan Rampp; Lynette Sadleir; Sanjay M Sisodiya; Irene Wang; Samuel Wiebe; Clarissa Yasuda; Brett Youngerman; ILAE Big Data Commission

doi:10.1002/epd2.20288

Big data research is everyone's research-Making epilepsy data science accessible to the global community: Report of the ILAE big data commission

Epileptic Disord. 2024 Oct 24. doi: 10.1002/epd2.20288. Online ahead of print.

Authors

Colin B Josephson^{1

2

3

4

5

6}, Eleonora Aronica^{7

8}, Sandor Beniczky^{9

10

11}, Danielle Boyce^{12

13

14}, Gianpiero Cavalleri^{15

16}, Spiros Denaxas^{6

17}, Jacqueline French¹⁸, Lara Jehi^{19

20}, Hyunyong Koh²¹, Patrick Kwan^{22

23

24}, Carrie McDonald²⁵, James W Mitchell^{26

27}, Stefan Rampp²⁸, Lynette Sadleir²⁹, Sanjay M Sisodiya³⁰, Irene Wang³¹, Samuel Wiebe^{1

2

3

4

32}, Clarissa Yasuda³³, Brett Youngerman³⁴; ILAE Big Data Commission

Affiliations

¹ Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
² Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta, Canada.
³ Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Alberta, Canada.
⁴ O'Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.
⁵ Centre for Health Informatics, University of Calgary, Calgary, Alberta, Canada.
⁶ Institute for Health Informatics, University College London, London, UK.
⁷ Department of (Neuro)Pathology, Amsterdam UMC, University of Amsterdam, Amsterdam Neuroscience, Amsterdam, The Netherlands.
⁸ Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, The Netherlands.
⁹ Department of Neurology, Albert Szent-Györgyi Medical School, University of Szeged, Szeged, Hungary.
¹⁰ Department of Neurophysiology, Danish Epilepsy Center, Dianalund, Denmark.
¹¹ Department of Clinical Medicine, Aarhus University and Department of Clinical Neurophysiology, Aarhus University Hospital, Aarhus, Denmark.
¹² Tufts University School of Medicine, Boston, Massachusetts, USA.
¹³ Johns Hopkins University Biomedical Informatics and Data Science Section, Baltimore, Maryland, USA.
¹⁴ West Chester University Department of Public Policy and Administration, West Chester, Pennsylvania, USA.
¹⁵ School of Pharmacy and Biomolecular Sciences, The Royal College of Surgeons in Ireland, Dublin, Ireland.
¹⁶ FutureNeuro SFI Research Centre, The Royal College of Surgeons in Ireland, Dublin, Ireland.
¹⁷ British Heart Foundation Data Science Center, Health Data Research UK, London, UK.
¹⁸ Department of Neurology, Grossman School of Medicine, New York University, New York, New York, USA.
¹⁹ Epilepsy Center, Cleveland Clinic, Cleveland, Ohio, USA.
²⁰ Center for Computational Life Sciences, Cleveland, Ohio, USA.
²¹ Harvard Brain Science Initiative, Harvard University, Boston, Massachusetts, USA.
²² Department of Neuroscience, School of Translational Medicine, Monash University, Melbourne, Victoria, Australia.
²³ Department of Neurology, Alfred Health, Melbourne, Victoria, Australia.
²⁴ Department of Neurology, The Royal Melbourne Hospital, Parkville, Victoria, Australia.
²⁵ Department of Radiation Medicine and Applied Sciences & Psychiatry, University of California, San Diego, California, USA.
²⁶ Institute of Systems, Molecular and Integrative Biology (ISMIB), University of Liverpool, Liverpool, UK.
²⁷ Department of Neurology, The Walton Cetnre NHS Foundation Trust, Liverpool, UK.
²⁸ Department of Neurosurgery and Department of Neuroradiology, University Hospital Erlangen, Department of Neurosurgery, University Hospital Halle (Saale), Halle (Saale), Germany.
²⁹ Department of Paediatrics and Child Health, University of Otago, Wellington, New Zealand.
³⁰ Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, London WC1N 3BG and Chalfont Centre for Epilepsy, London, UK.
³¹ Epilepsy Center, Neurological Institute, Cleveland Clinic, Cleveland, Ohio, USA.
³² Clinical Research Unit, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
³³ Department of Neurology, University of Campinas, Campinas, Brazil.
³⁴ Department of Neurological Surgery, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.

PMID: 39446076
DOI: 10.1002/epd2.20288

Abstract

Epilepsy care generates multiple sources of high-dimensional data, including clinical, imaging, electroencephalographic, genomic, and neuropsychological information, that are collected routinely to establish the diagnosis and guide management. Thanks to high-performance computing, sophisticated graphics processing units, and advanced analytics, we are now on the cusp of being able to use these data to significantly improve individualized care for people with epilepsy. Despite this, many clinicians, health care providers, and people with epilepsy are apprehensive about implementing Big Data and accompanying technologies such as artificial intelligence (AI). Practical, ethical, privacy, and climate issues represent real and enduring concerns that have yet to be completely resolved. Similarly, Big Data and AI-related biases have the potential to exacerbate local and global disparities. These are highly germane concerns to the field of epilepsy, given its high burden in developing nations and areas of socioeconomic deprivation. This educational paper from the International League Against Epilepsy's (ILAE) Big Data Commission aims to help clinicians caring for people with epilepsy become familiar with how Big Data is collected and processed, how they are applied to studies using AI, and outline the immense potential positive impact Big Data can have on diagnosis and management.

Keywords: artificial intelligence; big data; common data models; epilepsy; ethics.

Publication types

Review