Teacher feature: putting patient voices at the heart of research
Instructor features
By
Jenni Bozec
The Translational Research Program (TRP) at the University of Toronto stands out for its unique approach. Emphasizing real-world experiences and hands-on learning, the program's teaching staff embody this philosophy. The program brings together instructors who can be full-time academics or teachers and people actively working in various relevant industries or running their own entrepreneurial activities.
Meet some of our instructors to learn why and what they teach as part of the TRP.
Andrew Sedmihradsky
I was a TRP student myself (class of 2023), and the program had a big impact on my own advocacy journey.
As the father of a child with Duchenne muscular dystrophy, I had been working on awareness and research funding for years through a project called Max’s Big Ride. TRP helped me sharpen my strategy, build networks and work smarter.
I mentioned to the program director one day that it would be great to broaden the teaching about patient engagement. The program emphasizes talking to people and trying to understand their needs. I wanted to explore more about what's your mindset when you do that, and what are the real benefits of engaging with patients? How do you talk to people with empathy and compassion in an inclusive manner and empower them?
I had earned my teaching qualifications teaching English in Japan, so the program director suggested I teach it myself and we created this new module!
It runs for six weeks and explores how healthcare innovators can more effectively and ethically engage patients, caregivers and communities.
A big part of TRP is the capstone project, and to complete that, students will need to engage with patients or caregivers. My course gives them a foundation to do that respectfully and meaningfully. The students learn guiding principles - compassion, empathy, inclusivity - and how these apply in real-world contexts, including research, care and innovation.
What is unique in your approach and how do TRP students benefit from that?
Doctors may know a lot about a medical condition, but the patient will know more about what it’s like to live what that condition. What does it mean? How does it affect your life, and those you love? Sometimes this kind of data can be ignored.
We bring in patient advocates and researchers as guest speakers so the students can hear from, and engage with, people from a broad spectrum related to the topic.
In the module, we discuss how involving patients, caregivers and the community in decisions can make healthcare and research more effective. A healthcare plan is more likely to be adhered to if the patient is involved in some of the decisions along the way.
One of the outcomes from the module is for students to create their own patient engagement handbook. They have complete freedom in how they present it and I’ve had students even create their own “choose your own adventure” style book!
Tell us about an interesting or fun thing you’ve done in class recently.
Students finish the course by pitching a real engagement idea to one of our guest speakers. In the last module we brought in bench scientists from the Gunning Group Lab. Watch a video all about Andrew's work with the Gunning Lab (YouTube)
Scientists often have even fewer opportunities to engage meaningfully with patients than those on the clinical side.
The pitch to a real research lab or patient advocate is a highlight. It gives students a chance to take what they’ve learned and apply it to a real-world scenario. For some, it’s their first time directly engaging with different aspects of healthcare in a way that values patient voices.
