An important goal of Canada’s Strategy for Patient-Oriented Research (SPOR) is to give people living with diabetes more of a voice in research design and implementation so that outcomes are more relevant. The ultimate objective is to engage people living with diabetes as active partners in health research to maximize the benefits of research for Canadians and their communities.
Patient-oriented research is aimed at achieving benefits that matter to patients:
Co-Lead: Holly Witteman and Joyce Dogba
Project Coordinator: Olivia Drescher
Patient engagement and patient-oriented research go hand in hand. At Diabetes Action Canada, we believe that partnering with the people whose lives are touched by diabetes is critical to achieving our goals of finding real solutions to improve the lives of people and families who are living with this condition. Our Patient Engagement and Knowledge Translation Program co-leads Drs. Joyce Dogba, France Legaré (all from the University of Laval) published a recent paper in Health Expectations detailing the process of determining the topics most important to people living with or caring for someone living with diabetes. The findings of this paper have led to the organizational structure of our research Network and continue to inform our community of investigators and stakeholders.
Diabetes Action Canada strives to include a wide range of people living with diabetes (young and old, those with both Type 1 Diabetes (T1D) and Type 2 Diabetes (T2D), men and women) from diverse ethnicities and backgrounds as Patient Partners at all levels of our network. There is a growing understanding that some populations, such as Indigenous Peoples, new immigrants and seniors are not as often involved in research. To this end, we are working continuously to ensure that people involved as Patient Partners in Diabetes Action Canada are reflective of all Canadians whose lives are touched by diabetes.
Within Diabetes Action Canada, the Patient Engagement Program has established three Patient Circles: the Collective Patient Circle (16 Patient Partners); the Francophone Patient Circle (10 Patient Partners, to be renamed the Francophone and Immigrant Patient Circle); and, the Indigenous Patients Advisory Circle (10 Patient Partners). Each Patient Circle includes a variety of persons living with diabetes from across Canada with a shared mission to foster patient-oriented research relevant to diabetes and to contribute to better quality research on diabetes and its related complications. Patient Circles meet throughout the year to discuss projects and lend their expertise to researchers and administrators, as people who know what it is like to live with diabetes. Additionally, Patient Partners have the opportunity to become research team members. By sharing their lived experiences with the condition, they help ensure the science, publications, new projects and communication of our research findings are more relevant and more accessible to persons living with diabetes. In total, Diabetes Action Canada currently has 80 Patient Partners enrolled and participating at one level or another. Of these, 25 are currently actively collaborating on research projects.
Diabetes Action Canada Patient Partners at the 2018 Annual Workshop.
From left to right starting front row (3 rows):
ROW 1: Denis April, André Gaudreau, Patrice Bleau, Jaime Borja, Nadia Tabiou, Sasha Delorme, Serena Hickes, Richard Piché , Afifa BenGuiza
ROW 2: Virtue Bajurny, Debbie Sissmore, Shayla Hele, Alex M. McComber, Barb Nepinak, Clarence Nepinak, Kate Farnsworth, Holly Witteman, Elaine Brière,
ROW 3: Ross Gray, Malcolm Sissmore, Jill Wright, David Wright, Danielle Bérubé
To learn more about becoming a Patient Partner please visit us here
© 2019 Diabetes Action Canada – SPOR Network
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