Identifying Patient Engagement Practices in Epilepsy Research: A Systematic Review

Background: Patient engagement (PE) in research aims to enhance the relevance and applicability of scientific findings by addressing the needs and concerns of people with lived experience (PWLE) of a health condition. Although the importance of PE is increasingly being recognized for improving research quality and translation, how PE is implemented within epilepsy research still remains unclear. There are currently no standardized guidelines that describe which PE strategies are used, at what stages of the research process PWLE are involved, or how engagement is reported in this field. This systematic review identifies and describes the current PE practices in epilepsy research, including types of PE strategies used, reported challenges and facilitators, and any areas where evidence or reporting remains limited. Methods: This systematic review analyzes studies incorporating active PE in epilepsy research to identify the types of PE strategies present, their reported impact, and potential challenges. Inclusion criteria encompasses studies detailing active PE throughout the research process, such as in study design, dissemination of findings, protocol development, ethical considerations, and the guidance of research priorities and objectives to match the primary needs and concerns that are relevant to the condition being investigated. Results: Across included studies, PE most often occurred during the early stages of research such as in priority setting and study design, while later stages such as analysis and dissemination were reported less frequently. PE was commonly represented by caregivers in pediatric epilepsy studies, whereas the direct participation of individuals with epilepsy was typically seen in adult and mixed-age epilepsy studies. Overall, few studies reported accessibility, compensation, or standardized reporting practices for PE. Conclusions: This review identifies current PE strategies, challenges, and gaps in how PE is implemented in epilepsy research, and highlights the need for more consistent, inclusive, and transparent reporting of PE to strengthen the integration of lived experience into future epilepsy research. These findings will foster outcomes that support PE in epilepsy to align research more closely with patient needs and concerns. Significance: This study identifies gaps in recruitment, diversity reporting, and PE impact evaluation in epilepsy research, highlighting the need for more structured and transparent PE approaches. These findings can inform future development of guidelines to better align epilepsy research with patient priorities and clinical care.

Name thesis:degree_name

Master of Science (MSc)

Discipline thesis:degree_discipline

Medicine – Neuroscience

Grantor dc:publisher.institution

Graduate Studies

Year dc:date.issued

2026

Author dc:creator

• Winterburn, Netanya

Advisors dc:contributor.advisor

• Jacobs-LeVan, Julia
• Wiebe, Samuel

Committee members dc:contributor.committeemember

• Klein, Karl
• Dunbar, Mary
• Orr, Serena

• Patient engagement
• Neuroscience
• Epilepsy
• Public and patient involvement
• Patient-oriented research

Statement dc:rights

• University of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission.

Language dc:language.iso

en

DOI

https://dx.doi.org/10.11575/PRISM/51423

OAI identifier oai:identifier

oai:ucalgary.scholaris.ca:1880/124861