By Krista Lamb
A new paper from the lab of Dr. Robin Mason of our Sex and Gender team has been published in the Canadian Journal of Diabetes. The paper, Exploring the lived experience of diabetes through an intersectional lens: A qualitative study of adults with type 1 and type 2 diabetes, takes and in-depth look at how a person’s lived experience affects their diabetes outcomes.
“In terms of research findings, I think the key takeaway from our study is that care and treatment decisions really need to be discussed with and tailored to the individual and that having this kind of conversation requires care providers engage in a different kind of relationship with their patients,” says Mason. “But the other key takeaway from this project has less to do with the study findings and more to do with the research process itself, specifically how working with the Patient Partners enriched not just the study in all kinds of ways but also our understanding of what it is to live with diabetes.”
Two Diabetes Action Canada Patient Partners, Virtue Bajurny and André Gaudreau, were members of the research team and co-authors on the paper.
“This project was a long time in development. The idea for the study arose out of conversations and presentations I heard during past Diabetes Action Canada annual conference and meetings. There were, for example, comments by young women about the unpredictability of their blood sugars when they were menstruating and how little they had learned about this possibility from their physicians. I was interested in what other potentially “unknown” experiences there might be,” says Mason. “At one of the annual meetings I floated the idea and asked if there were patients who would be interested in partnering in a collaborative study about living with diabetes. A few people expressed interest and some of them stayed interested over the next year (and more) while we worked to get the study underway and found the right person, Dr. Zoey Jones, to lead, and Jenn Akerman to help with the study. We sent email updates to the interested individuals and when we were in a position to begin, we met regularly via Zoom. Patient Partners were full partners to the extent they had the time and interest. They helped develop the interview guide, participated in the training on the coding software, coded transcript excerpts, helped with the thematic naming and organization of results, etc.”
This study is a great example of how people with diabetes can be fully embedded in a research study and provides important learnings on the need to incorporate a person’s life experience into research on potential therapies for diabetes.