From Access to Impact: Reflections from UHN PiPER Research Day 2025 on OpenNotes, Equity, and the Power of Patient Partnership

This October, I had the privilege of presenting at the PiPER 2025 Research Conference—a space committed to equity-focused research exploring the immense value that patient engagement can bring to institutions. It was an affirming and energizing day, and if there’s one word I keep returning to, it’s impact.

Not just the impact of data or frameworks—but the impact of lived experience at the centre of care, and of patients not just having a voice, but having power.

What Is OpenNotes—and Why It Matters

The OpenNotes movement began as a bold experiment in the U.S., rooted in one powerful idea: patients should be able to read the notes clinicians write about them. It sounds simple, but the implications are profound. OpenNotes promotes transparency, deepens trust, and helps patients better understand and manage their care. Today, it’s a global movement touching over 250 health systems and approximately 54 million patients worldwide.

In Canada, we’re still early in scaling OpenNotes in mental health—but we’re gaining momentum. I’m proud to be working alongside a brilliant team at the Digital Mental Health Lab at CAMH—a team that believes in co-designing systems with patients, not just for them.

Together, we’ve been exploring how OpenNotes works within a mental health setting, and what it means for people who’ve experienced events like trauma, medical gaslighting, or the long and lonely road of the diagnostic odyssey.

Our Research: Centering Patient Voices

Our recent study, “Patients and caregivers as partners in mental health research: A co‐designed evaluation of OpenNotes in a psychiatric hospital,” is the first of its kind in Canada. We didn’t just ask patients for feedback—we co-led the research with them.

And what we found is both hopeful and challenging:

🧩 67% of patients said OpenNotes helped them better understand their mental health.

💬 40% of clinicians, however, expressed discomfort with full transparency—citing fears around misinterpretation or clinical risk.

🪞 Some patients said reading their notes reaffirmed their experiences, while others found confusing or overly clinical language that felt depersonalizing.

✏️ Nearly all participants agreed: language matters—and mental health notes need to be written with compassion and clarity.

(Source: CAMH Digital Mental Health Lab, internal evaluation data presented at UHN PiPER Research Conference 2025; Kassam et al., 2022, SAGE Open Medicine.)

These numbers tell a bigger story. They tell us that patients want to be informed. That clinicians care deeply about doing this well. And that there is a gap—a communication gap, a power gap—that we have an opportunity to close.

From the Margins to the Table

Being part of this research wasn’t about being a “case study.” It was about being a co-author. A thought partner. A changemaker.

At PiPER Research Day, I spoke about how OpenNotes isn’t just a tech solution—it’s a trust solution. And that’s especially true in mental health. When you’ve been through complex chronic illness or medical trauma, transparency isn’t a luxury—it’s essential for healing.

Throughout the day, I kept hearing echoes of our work in other sessions. The term “PLEX through the heart”—Patient-Led Experience—surfaced again and again. That’s what this is. That’s what we’re building.

As a patient partner, my role isn’t to rubber-stamp research that’s already done. It’s to ask different questions, raise red flags, and help translate abstract ideas into lived realities.

Change Is Slow—Until It Isn’t

There were moments, not long ago, when I wondered if my voice really mattered in these systems. If all my advocacy—sharing my story, pushing for inclusion—was making a dent.

But this conference reminded me: change is slow, until it isn’t. And sometimes, all it takes is one conversation, one presentation, one insight to unlock something bigger.

Final Thoughts

I’m proud to be part of a project—and a movement—that’s redefining what partnership looks like in healthcare. OpenNotes isn’t a checkbox. It’s a doorway. One that invites all of us—patients, clinicians, researchers—to do things differently. To build trust. To co-create systems that heal, rather than harm.

To the team and my colleagues at CAMH’s Digital Mental Health Lab: thank you for your vision and your heart.

To the PiPER organizers: thank you for giving us a platform.

And to every patient partner reading this: your voice matters more than you know.

We’re not guests at the table anymore.

We’re co-builders of what comes next.