Patient and family advisors share their experiences: What we heard in OBI's first engagement survey
20 octobre 2025
We launched our first Advisory Committee Engagement Experiences Survey in June 2025, aiming to collect insights and stories from patients, youth, and families about their engagement experiences with OBI’s Integrated Discovery Programs (IDPs), including research and knowledge sharing activities. Survey findings provide a snapshot of impactful engagement that we can build on and expand, as well as gaps in engagement that we can address and grow.
Thirty-one advisory committee members, representing nearly half of all advisors across OBI’s five IDPs, shared their experiences. Their input paints an encouraging picture of strong partnerships while also offering valuable insight into areas for improvement.
Building on strong foundations
The survey was developed in partnership with multiple partners representing IDPs and patient, youth, and family advisors. This was intended to ensure that questions and content reflect meaningful and priority engagement areas.
In the final survey, we asked partners across five IDPs about how engaged they felt in our research, using a well-established questionnaire designed to measure meaningful involvement. The average score was 78.5 out of 100 — placing us in the second highest category of “moderately meaningful engagement.” This shows that IDPs’ efforts to include patient and community voices in research are making a real impact.
Advisors highlighted several strengths:
- Workload and time commitments feel manageable.
- Opportunities to share opinions are frequent and valued.
- Meetings are accessible, inclusive, and fairly compensated.
"I really appreciate it when scientists have thought the engagement through in advance and ask for my input on specific items," one advisor said. "I enjoy the intellectual satisfaction of that and knowing that I made a difference with my contribution."
Another emphasized the partnerships being built: "They truly considered the team's feedback and changed their strategy based on our input. It was a genuine intellectual exchange and we were equal partners."
The feedback loop: Closing the circle
The survey also highlighted a key opportunity for growth. Advisors want to better understand how their contributions influence decisions and shape research directions. This feedback underscores the importance of communicating back about the impact of their input.
The data supports this. Advisors who felt their perspectives directly influenced research and knowledge translation activities reported significantly higher engagement scores. The takeaway is clear: we need to strengthen communication about how advisor input leads to change.
We also learned that while advisors generally feel comfortable raising topics related to equity, diversity, and inclusion, there is room to deepen that sense of belonging, particularly for those from equity-deserving communities.
Building on what works, improving what matters
This first survey provides both a baseline and a roadmap for continuous improvement.
We’re strengthening:
- Communication about how advisor input shapes research and decision-making
- Orientation and onboarding for new advisors
- Learning opportunities throughout advisors’ time with us
We’re continuing:
- Strong compensation practices
- Accessible, inclusive, and flexible meeting formats
- Diverse opportunities for involvement across programs
- Collaborating with patient, youth, and family partners on collecting feedback
We are deeply grateful for the honest feedback from OBI advisors and invested in acting on what they've shared. Over the coming months, we will work closely with advisors and our IDPs to bring these improvements to life. We are also documenting real-world examples of how lived experience has influenced research decisions, demonstrating the tangible impact of partnership.
This is only the beginning — we plan to conduct this survey annually to track our progress and ensure accountability over time.
Strengthening trust through transparency
Conducting this survey and sharing findings are part of OBI's ongoing commitment to transparency, accountability, and meaningful engagement. By listening directly to our advisors and sharing these findings openly, we are ensuring that we play a role in supporting patients, youth, and families in shaping the future of brain health research in Ontario.
The full report on the Advisory Committee Engagement Experiences Survey is available here.