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Because your voice matters.

Respondent, Epilepsy Research

Posted • Last updated


Open to Patient partners across Canada

Last updated

If you have epilepsy or experience seizures, or if you care for or work with someone who does, The Ontario Brain Institute, EpLink and the James Lind Alliance want your help in setting the priorities for epilepsy research. They’re looking to hear what questions you want answered about causes or diagnosis, treatment, managing day-to-day life or managing co-existing conditions related to epilepsy. Your questions will help direct researchers towards finding solutions that better reflect your needs and will have the greatest benefit to you.

The Ontario Brain Institute, EpLink and the James Lind Alliance have come together to organize a Priority Setting Partnership (PSP) on epilepsy. This Partnership aims to shape future research on epilepsy and seizures by bringing together patients, their caregivers and health care providers to identify and prioritize unanswered questions around treatment and care to present to researchers and funders.

The first step is to collect your unanswered questions. By participating in the survey, you will have the opportunity to share the questions you want answered about your experiences living with epilepsy or seizures, or providing care to someone who does. We are looking for the perspectives of patients, family members and caregivers, and clinicians across Canada.

Read more about the survey and how to participate.

From Our Community

Shana Ooms

Executive Director of Primary Care Strategy, Policy and Quality — BC Ministry of Health

Shana Ooms

Where those of us in the room may have debated policy or wording, patient voices made sure patients were top of mind. And as a result, significant improvements were made to simplify something that was otherwise complex. Patient voices at the table bring us back to reality in terms of what we are trying to achieve.