What does it mean to be engage and contribute as a patient partner?
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.
Diabetes Action Canada aims to integrate the patient and community perspective into every step of the research process including developing research questions, defining research objectives, collecting data and evaluating results; however, while some patients have the readiness to contribute as full members of research teams, others may bring a range of expertise. Overall, roles will vary according to the contributions a person is prepared to offer.
Patient-oriented research is aimed at achieving benefits that matter to patients:
Improved access to the health care system
The right treatment at the right time
Being an active and informed partner in health care
Better quality of life
Make a contribution to improving the cost-effectiveness of the health care system
There are many ways to be actively involved
Join a Patient Circle!
Get involved in a research team!
Find opportunities to share your experience!
Connect with our Patient Partnership Lead, Linxi Mytkolli, to learn about opportunities that might be a good fit for you.
Who can get involved?
Those living with any type of diabetes or prediabetes
Caregivers (including family and friends) of those living with diabetes
We aim to have Patient Partners from a variety of backgrounds so that research in our network can serve all people with diabetes. We are often looking specifically for people in one or more of these groups:
You moved to Canada and you care about the realities of living with diabetes as an immigrant
You are Indigenous and are living with diabetes of any type
You are living in a remote community with diabetes of any type
Patient and Community Engagement is at the Heart of What We Do
We believe that engaging patients in research is the cornerstone to building a health care system that is sustainable, accessible, inclusive, and equal for all.
By sharing their lived experiences, our Patient Partners help ensure our research findings are more relevant and accessible to persons living with diabetes.
Engaging individuals and caregivers in our work ensures the projects, research, tools and information Diabetes Action Canada develops are relevant to those who live with diabetes.
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.
“Patient engagement and patient-oriented research go hand in hand.”
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.
An important goal of Canada’s Strategy for Patient-Oriented Research (SPOR) is to give people living with diabetes more of a voice in designing and implementing research projects. The ultimate objective is to maximize the benefits of research for people living with diabetes.