The value of patient and public involvement in the design of research questions is recognized increasingly across the globe. Engaging patient partners in setting research priorities increases the generation and uptake of new evidence that is meaningful and relevant to the community, while reduces wasted resources. The iT1D program works with people living with T1D at many levels to direct project planning towards outcomes that address the health and social concerns to the T1D community. We have learned a tremendous amount from this experience, and have identified a gap in connecting individuals with T1D, healthcare practitioners and researchers, who are all interested in connecting with their peers and each other. To bridge this gap we are creating a T1D Registry to first act as a patient empowerment and engagement community that also facilitates clinical research in Canada. To join this virtual community an eConsent platform and digital infrastructure will be created to allow people living with T1D to register and have a safe environment to have their voices heard, their stories told, their reported data be used to benefit the T1D Community, and their data be used to help with scientific advances in T1D. To help us develop this tool so it is both useful and inspiring to individuals living with T1D we are engaging our Diabetes Action Canada Patient Partners and the T1D ThinkTank, to learn from patient narratives and understand individual and group experiences in healthcare and quality of life. Below is a living graphic from our most recent collaborative Insight Session.
Summary graphic for the Diabetes Action Canada and The T1D ThinkTank Collaborative Insight Session.
Graphic created by Erica Bota from Think Link