Reflections from the UHN PiPER Research Conference on the power of patient partnership, the promise of OpenNotes, and what it means to create impact through lived experience. Featuring new insights from CAMH’s Digital Mental Health Lab and a call for more transparent, trauma-informed care.

For the millions affected by Mast Cell Activation Syndrome (MCAS) — an underrecognized condition of immune dysregulation that affects multiple systems in the body — care is growing increasingly scarce. In Canada, the retirement of one of our country’s only MCAS specialists has left thousands of people, including myself, without access to proper treatment, diagnoses, or even understanding from the healthcare system.

What does empowerment really mean in the recovery process? I had the chance to speak at CAMH’s Patient & Family Experience Week on this very topic. In my latest blog, I share personal reflections, key takeaways from the panel, and why lived experience matters more than ever.