By patient partners and trainees, and for patient partners and trainees: Sharing the CASS experience

Nejat: I was very excited to join the Steering Committee for several reasons. First, it was a wonderful opportunity to connect with other trainees and patient partners from across Canada. Second, I looked forward to developing new skills, such as conference and logistics planning. Lastly, I was eager to share my own experiences to help move the rheumatology field forward.

Julie: The opportunity to participate in a project where we could co-design a three-day virtual Canada-wide event was really interesting to me. I have worked as a patient partner on multiple research projects, and I was eager to gain insight into the experience of other patient partners and trainees. I had past experience with training opportunities and webinars offered by IMHA and knew they’d be a great group to work with.

Laurie: I really enjoy working with trainees - it’s an opportunity to get to know them early on in their careers and has the potential to influence their trajectory in research. It seems like a perfect time to collaborate with them as a patient partner with the hopes that they might continue to do so for years and decades to come. 

Min: As a PhD student, I’m passionate about bringing patient perspectives into my research. I saw CASS as a way to step outside the usual academic environment, collaborate with patient partners in a novel way, and deepen my understanding of patient engagement in research. I wanted to be part of the Steering Committee because it felt like a chance to create something new that didn’t exist before—a summer school co-designed by and for patient partners and trainees. I was curious about how we could take ideas from brainstorming to a finished program.

Nejat: My favourite part was being on the panel about best practices for patient engagement, where I could share my own experiences from working in rheumatology research. I loved hearing the other panelists’ stories and reflecting on the ways our experiences—as researchers and patient partners—were both similar and different. It really reminded me that every experience is valuable, and that by sharing them, we can better understand patient needs, ask more relevant research questions, and find creative, equitable solutions. That richness of diverse perspectives is what makes the rheumatology field stronger and more innovative.

Julie: My favourite part was working with such a diverse group of people with different experiences in research. The IMHA folks were so supportive and really were the glue that held it all together. The learning opportunity, for me, was how to work with a mixed group over a longer planning cycle using only the online platform for meetings. The last months prior to the event went by very quickly, while the first months did seem to drag. All this was valuable learning about how to work with others in the online environment.

Laurie: I knew working with IMHA would be ‘easy’ without a lot of the additional labour I can experience with other teams and my expectations were met. Everything was well-planned, flexibility was the norm, and I spent a lot of time just listening to other Steering Committee members. I love how, even as patient partners, we bring such different, unique perspectives.

Min: My favourite part was watching our ideas for CASS take shape and grow stronger with every conversation. Each time patient partners and trainees added their perspectives, the program became richer and more layered. It was incredible to see those early brainstorming sessions transform into a full event, with every Steering Committee member contributing something unique from their own experience. I think that diversity of voices is exactly what made CASS feel so different—and so much more engaging—than a traditional research conference.

Dawn: I learned new ways that people could be supported to contribute to co-creating the Summer School. I also learned about topics that both trainees and patient partners find interesting, which mostly weren’t specific to arthritis but more in how research is done and shared.

Hetty: Because the Steering Committee was representative of the target audience for the conference, they co-created a program that was much more innovative and engaging than we could have developed as an Institute team. I also learnt a lot through observing a team come together cohesively when traditional hierarchies have been dismantled.

Nejat: As an attendee, I really enjoyed learning about the diverse research projects being shared. In my role as an event leader, I truly appreciated the teamwork and collaboration required to make everything run smoothly. And as a speaker, I gained valuable insights from my co-panelists that expanded my own understanding. Experiencing the summer school from these different angles helped me see how all the pieces come together, deepening my appreciation for everyone’s hard work. It was a rewarding experience that taught me a lot about growth, collaboration, and engagement!

Julie: I partnered with one of the trainees as co-host and facilitator for the first day of the summer school. It was a positive experience to work together to plan an approach that would create a welcoming and engaging environment for all attendees. I learned more about the trainee experience through that collaboration. I found that insight valuable and will take it with me on future research projects.

Laurie: I really liked working with the trainee as a co-host and getting right into the operational aspects of Day 3. I also enjoyed facilitating the Open Science session and tried my best to bring both trainee and patient partner perspectives to the planning of the session. It was great to hear from different research teams, including trainees, about their work and hearing how to work with Indigenous communities.

Min: Taking on multiple roles throughout the summer school gave me a front-row seat to the event’s many moving parts. Apart from co-designing CASS, I was also a co-host and an attendee at the event. As a co-host, I focused on creating an inclusive, safe space and sparking meaningful conversations—while also keeping an eye on the clock to keep things running smoothly. At the same time, stepping back as an attendee allowed me to soak up the content of the sessions without distractions (e.g., keeping track of time, facilitating discussions) and reflect on how the sessions connected my real-world experiences.