Data-Driven Alerts to Support the Care of People Living With Epilepsy and Provide an Infrastructure for the Development of Real-World Evidence
Author(s)
Alex D. Marshall, PhD1, Mohamed Taha, MD1, Richard Hassett, BA2, Jonathan Todd, LLB3, Sean Macbride-Stewart, PhD2, Daniel Mackay, PhD1, Cedric Laloyaux, PhD4, Olaf Radunz, MSc4, Jenna Roberts, PhD5, Claire Wilson, PhD5, Craig A Heath, MD, MB ChB, BSc(Hons)1.
1School of Health and Wellbeing, University of Glasgow, Glasgow, United Kingdom, 2Medicines Management Resources, NHS Greater Glasgow and Clyde, Glasgow, United Kingdom, 3Information Management, NHS Greater Glasgow and Clyde, Glasgow, United Kingdom, 4UCB, Brussels, Belgium, 5UCB, Slough, United Kingdom.
1School of Health and Wellbeing, University of Glasgow, Glasgow, United Kingdom, 2Medicines Management Resources, NHS Greater Glasgow and Clyde, Glasgow, United Kingdom, 3Information Management, NHS Greater Glasgow and Clyde, Glasgow, United Kingdom, 4UCB, Brussels, Belgium, 5UCB, Slough, United Kingdom.
OBJECTIVES: Despite advances in ASM therapies, many people living with epilepsy (PWE) are still unable to achieve seizure freedom and mortality rates remain higher than the general population. Data-driven alerts can inform health care professions of adverse events, allowing early support and review during high-risk periods. NHS Greater Glasgow and Clyde have created a registry infrastructure comprising an epilepsy patient cohort and data-driven alerts visualised on an Epilepsy Dashboard, allowing timely support after seizure emergencies. The infrastructure also provides the opportunity to collect key variables as part of routine clinical practice, and an early priority has focused on those attending the emergency department (ED) as a result of a seizure emergency. Recent adaptations to the infrastructure allow the identification of prolonged seizure (PS) incidence in accordance with published consensus definitions, permitting a range of outcomes to be evaluated for these patients.
METHODS: Patients were initially identified through the near-live integrated Epilepsy Dashboard with seizure-related ED admissions between January 1, 2022, and December 31, 2022. Patients who met the current International League Against Epilepsy definition for epilepsy following manual review of the electronic patient records were included. Data were subsequently anonymised and linked to national routine health data. Future aims will incorporate history/incidence of PS for these patients.
RESULTS: In the original cohort, 726 epilepsy-related admissions were generated during the study period (531 PWE). The mean age was 47 (range 16-90) years. Seizure duration was noted in 375/531 (71%). PS were noted in 74/531 (14.0%), a seizure cluster in 86/531 (16.2%), and status epilepticus in 163/531 (30.7%).
CONCLUSIONS: The infrastructure provides an efficient solution to support patients and affords an opportunity to collect key clinical variables under routine clinical practice. Merging granular data with routinely collected health data has the potential to provide a rich source of real-world evidence.
Funding: UCB-sponsored
METHODS: Patients were initially identified through the near-live integrated Epilepsy Dashboard with seizure-related ED admissions between January 1, 2022, and December 31, 2022. Patients who met the current International League Against Epilepsy definition for epilepsy following manual review of the electronic patient records were included. Data were subsequently anonymised and linked to national routine health data. Future aims will incorporate history/incidence of PS for these patients.
RESULTS: In the original cohort, 726 epilepsy-related admissions were generated during the study period (531 PWE). The mean age was 47 (range 16-90) years. Seizure duration was noted in 375/531 (71%). PS were noted in 74/531 (14.0%), a seizure cluster in 86/531 (16.2%), and status epilepticus in 163/531 (30.7%).
CONCLUSIONS: The infrastructure provides an efficient solution to support patients and affords an opportunity to collect key clinical variables under routine clinical practice. Merging granular data with routinely collected health data has the potential to provide a rich source of real-world evidence.
Funding: UCB-sponsored
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
RWD52
Topic
Real World Data & Information Systems
Topic Subcategory
Health & Insurance Records Systems
Disease
Neurological Disorders