A mother and a researcher reflect on what happens when research finally listens.
In this powerful and honest conversation, Kristi, a mother living with epilepsy, shares what it was like to navigate pregnancy from switching medications and managing seizures to dealing with fear, judgment, and uncertainty. Patti, a maternal health researcher, speaks to the critical gap between what we measure and what people actually experience.
Together, they highlight why lived experience isn’t just a story; it’s essential knowledge that should shape how research is done and how care is delivered.
Research often overlooks the voices of those it impacts most. When pregnant people with chronic conditions like epilepsy are excluded from research design, the result is information that doesn’t reflect their reality and that can affect care. This video is a call for more inclusive, community-grounded, and respectful research.
Your voice matters. Share this video to help others see why research needs to reflect real life, not just numbers.
Want to help build research that’s more fair and grounded in real life?
Interested in co-creating resources to support future parents with us? Contact us at info@healthypregnancyhub.ca.
Credits
Patricia (Patti) Johnston
University of Calgary
Émy Roberge
Centre hospitalier universitaire Sainte-Justine
Anick Bérard
Centre hospitalier universitaire Sainte-Justine
Catherine Lord
Immerscience Inc.