Diabetes Action Canada Assembles for its Annual Workshop to Tell Our Stories About Patient-Oriented Research as We Envision the Future

Diabetes Action Canada Assembles for its Annual Workshop to Tell Our Stories About Patient-Oriented Research as We Envision the Future

On May 31st- June 1st, 2019, member of Diabetes Action Canada came together for its fourth Annual Workshop.  After three full years in operation, we highlighted our many accomplishments – presented by Patient Partners, Investigators, Trainees, Clinicians and Partners. Stories were presented of our journey and the impact our Patient Partners have made on planning and implementing meaningful research.

Prior to the Workshop, we held a one-day Patient-Oriented Research (POR) Training session co-facilitated by our Patient Partners Howard English and André Gaudreau.   Among the attendees were Dr. Jean-Pierre Després, the co-Scientific Lead for the Network, Dr. Holly Witteman and Dr. Peter Senior, Diabetes Action Canada Steering Council members.  POR Training is a requirement for all members of Diabetes Action Canada and a fun and interesting opportunity to develop a safe environment for diverse stakeholders to share their perspectives and contribute to research in a meaningful way.   This training has been adapted from the CIHR curriculum on Patient-Oriented Research to include many hands-on and interactive activities to illustrate patient-oriented research concepts, share personal perspectives on research and build trusting relationships.

On May 31st our Workshop began with a welcome by our Steering Council Chair, Dr. Malcolm King and opening ceremony by Spiritual Elders Barb and Clarence Nepinak.  The theme of this year’s Workshop was “Telling Our Stories about Patient-Oriented Research Outcomes and Challenges to Envision the Future” and we kicked off our activities by hearing stories from our Patient Partners, on their experiences living with diabetes and working with Diabetes Action Canada.  We then held a series of rapid-fire oral poster presentations to highlight tangible research outcomes within our network.  To finish the morning we have a plenary session discussing “Advocating for change in the health system by connecting with decision-makers” a goal that emerged during our 2018 Annual Workshop.  Thank-you to our presenters, Maureen Markle-Reid, Mathieu Ouimet, Joe Cafazzo, Valeria Rac and our respondent Diane Finegood.

In the afternoon, we were pleased to invite Dr. Holly Witteman, Diabetes Action Canada Co-Lead for our Patient Engagement Research Program, Steering Council Member and person living with type-1 diabetes to give an interactive keynote on Power Dynamic and Health Research, Care and Policy.  Holly invited Patient Partners Sasha Delorme and Alex McComber and Investigators, Jon McGavock and Peter Senior to discuss their experiences understanding their power within the healthcare system, or lack thereof, in situations where they were either at an advantage or disadvantage.  This led to interesting discussions as we learned how these power struggles occur, are recognized and eventually overcome.

Following the keynote, four of our research programs facilitated breakout sessions to gather feedback from attendees on research planned and underway.  These sessions were excellent opportunities to learn from a diverse group of stakeholders. Among those who participated were CIHR Director, Dr. Norm Rosenblum, and Associate Director, Dr. Mary-Jo Makarchuk, of the Institute of Nutrition, Metabolism and Diabetes, and Project Lead, SPOR Major Initiatives, Tia Moffat.  Later that evening Tia Moffat and SPOR Executive Director David Clements joined our Steering Council meetings where we had an opportunity to discuss the next phase of the SPOR program and the necessity of renewal.

June 1st, followed much of the format of the previous day with the day kicked off by Patient Partner stories and rapid-fire oral poster presentations. Our second plenary session focused on “Access to Effective Care Paths and Overcoming Barriers”, another topic emerging from our 2018 Workshop, and featured talks from Maman Joyce Dogba, Ann-Marie McLaren, Michelle Griever, John McGavock and Paula Rochon.  Collectively we heard of some of the important initiatives that are underway to enable improved health care experiences and the impact that Diabetes Action Canada, as a backbone organization, has had to facilitate this research. A detailed report from our Annual Workshop will be available in the by the end of July 2019 and published on our website.

A special thank- you to Patient Partners Sasha Delorme, André Gaudreau, Dana Greenberg, Marley Greenberg, Kate Farnsworth, Conrad Pow, Shayla Hele, Pina Barbieri, Devin Cleary Gooden and Debbie Nuna for sharing their stories with us.  It was a moving reminder of why Diabetes Action Canada focuses its work on improving health outcomes for those living with diabetes.

Congratulations to trainees Ruth Ndjaboue and Nika Klaprat for their Poster Presentation awards. Thank-you to the Patient Partner judges for all their fantastic feedback!

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