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“What a blast! Definitely the highlight of my week. It is exciting to hear about their research interests and see how much they absorbed around meaningful patient engagement – the course definitely made an impact! A fulfilling experience for me.”

• Donna Rubenstein, patient partner, Nova Scotia

“Kerry, thank you SO MUCH for a phenomenal course. I knew from the time I read the course description that it was going to be a wonderful elective and I feel so fortunate to have had the opportunity to take it. It not only gave me very actionable ways to improve my future research but also reinspired me as a clinician to find fulfillment in learning from my patients as partners in their care.”

• Dr. Shara Fitzgerald, student in the course

Partnering with patients, families and communities is essential to have true system impact and inform the design of person-centred health and social care systems that are responsive and aligned to the needs of people who use them.

Four years ago, Dr. Kerry Kuluski¹ was chatting with Dr. Susan Law² who had developed a reading course on patient and caregiver engagement in research.

“What if we develop a full-blown comprehensive course?” asked Dr. Kuluski?

From there, a dynamic group of community and patient partners, faculty, researchers, and trainees formed a curriculum committee to co-design Patient and Caregiver Engagement in Research, a new comprehensive 9-week course offered every year to University of Toronto graduate students through the Institute of Health Policy, Management and Evaluation (IHPME), Dalla Lana School of Public Health. The course walks through all stages of the research life cycle from priority-setting to evaluation, with modules on ethics and equity, diversity, and inclusion.

Dr. Kuluski, Course Director, other IHPME faculty and engagement thought leaders, including an outstanding group of patient and caregiver partners, just completed their fourth year delivering this course. To date, 24 patient and caregiver partners from across Canada and the United States have dedicated their time, energy and expertise to mentor the next generation of health services researchers.

The course design and delivery exemplify the essence of true partnership with community, patients and caregivers who: 1) co-create the content, 2) serve as mentors and co-teachers in the classroom setting, and 3) provide learnings into their partnership experiences via interviews by students in class.

Thanks to OSSU funding, all patient and caregiver partners are offered an honorarium for their time. Having people with lived experience in the health care system who mentor students throughout the course really brings engagement principles to life.

This critical methods course will increase capacity and skills in engagement research. To support students partnering with patients and caregivers in their thesis and capstone work, students can apply to OSSU’s Partnership Capacity Building Fund. The fund was created by Kerry and two of her PhD students, Emily Cordeaux and Yasmin Sheikhan, in partnership with OSSU which is committed to supporting students and patient partners  with  two funding opportunities per year.

Thank you to the patient and caregiver partners for bringing this course to life each year:

Richard Adair, Arun Bala, Lorainne Bayliss, Ron Beleno, Desiree Bradley, Samira Chandani, Col Steven Coffee, Katherine Dib, Kathy Dutchak, Trudy Flynn, Frank Gavin, Lotje Hives, Sandra Holdsworth, Isabel Jordan, Omar Khan, Edwin Laryea, Rae Martens, Alies Maybee, Judy Porter, Donna Rubenstein, Mohammad Shabani, Maureen Smith, Michele Sparling and Adrienne Zarem.

Find more details here.

¹Dr. Kerry Kuluski is the Mathias Gysler Research Chair in Patient and Family Centred Care at the Institute for Better Health at Trillium Health Partners and Associate Professor at the Institute of Health Policy, Management and Evaluation at the University of Toronto.

²Dr. Susan Law is an Associate Professor at the Institute of Health Policy, Management and Evaluation at the University of Toronto.