Opening Letter from Co-Scientific Leads

This year, Diabetes Action Canada is reflecting on the achieved impact to date and the future direction of our research Network.  We have started a very detailed critical assessment of our Network starting with meetings with each of our Research Programs.  The information we have gathered will set the stage for our larger health technology assessment and network analytics exercise that is about to launch under the leadership of Dr. Valeria Rac (THETA Collaborative, University of Toronto) and Dr. Mathieu Ouimet (University of Laval).

As we examine our impact to date, we are highly impressed at the roles our Patient Partners have played in influencing our research activities towards outcomes that are truly meaningful to the diabetes community.  In this issue of the Diabetes Action Canada newsletter, we highlight some fantastic examples of the transformative influence of our Patient Partners as they become deeply engaged in our research projects.  We are pleased to report on two events that took place this winter with our Francophone Patient Partners and Researchers.  The first was an interactive workshop with the Knowledge Translation program to discuss the research projects underway and role of Patient Partners.  The second was an interactive four-day winter camp in collaboration with CardioMetabolic health, Diabetes and Obesity (CMDO).  I (Jean-Pierre) had the pleasure of attending the latter event and was inspired by the level of Patient Partner participation and the critical feedback they provided to the researchers.

In this Newsletter, we are featuring the Innovations in Type-1 Diabetes (iT1D) Research Program and their approach to patient engagement. This is a wonderful example of how our Patient Partners re-directed the thinking of our researchers and the focus toward a more meaningful goal. This project, originally envisioned as a registry, was transformed by input from Patient Partners eager for the development of a Canadian specific digital community to share stories, voice opinions, learn from peers, learn about clinical research opportunities, and provide patient-reported data to facilitate scientific advances.  I (Gary) had the pleasure of attending the Insight Session, held in collaboration with the T1D Think Tank Network, to discuss this project and found the Patient Partner narratives extremely effective in reminding me of the daily struggles of living with T1D and the need for such a communication network to empower patients to support improved self-management among their peers and to participate in clinical research.

We have both been so moved by our interactions with the Patient Partners over the last few months that we wish to invite our Patient Partners to share their stories at our annual Workshop in May 2019.   We will be highlighting these stories throughout the event and on our website to bring context to key concerns of those living with diabetes and the value of patient-oriented research to finding solutions.

We are also thrilled to announce the launch of our new and improved website https://diabetesaction.ca/.  This site was launched in tandem with the National Diabetes Repository site https://repository.diabetesaction.ca/, and together these sites aim to improve communication and provide a user-friendly platform to find and request access to information on our Network. Check-it out!

We are so impressed with how far we have come as an organization as we reach the mid-point in our funding term and we are excited to showcase the fantastic work by our phenomenal research and Patient Partner teams.

Gary Lewis

Jean-Pierre Després


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