Social and Community Research

Epilepsy affects over 50 million people globally, yet significant gaps remain in understanding its full impact on individuals and communities. Local community-based researchers are working as part of a global team seeking to bridge this gap by collecting comprehensive data and firsthand insights from Canadians who are directly affected by epilepsy. This understanding is essential for driving meaningful change in national and global policy, research, and healthcare programmes.

  • This plan of action known as the IGAP was unanimously ratified by 194 countries including the Government of Canada. One of the six guiding principles of the IGAP is that people living with neurological disorders, their families, local communities, and organizations that represent them should be empowered through engagement and consultative mechanisms in care planning, service delivery, policy and legislation development, program implementation, advocacy, research, monitoring, and evaluation.
  • Using participatory action research, local community researchers have been actively involved in the development of a series of toolkits to support IGAP implementation.

Local Partnerships
  • At the local level, community researchers are engaged in research to improve the school success of children with epilepsy. This includes the development and evaluation of a teacher training video and modules to support a student with epilepsy and cognitive, behavioural, and/or psychological challenges.
  • Community researchers are also engaged in developing and evaluating health information programs and in exploring the care experiences of children and adults living in Ontario.

Global Partnerships
  • In partnership with the International Bureau for Epilepsy, local community researchers are partnering to administer a global survey where we will ask people with epilepsy and their caregivers about different parts of their life (for example, quality of life and ability to achieve life goals, education and/or employment, safety, healthcare and wellbeing etc.).
  • Local community researchers are also engaged in working with policy makers and the Canadian Government to support implementation of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (2022-2031).