My journey to the Diabetes Canada Conference began in May 2024, when I was honoured to be selected as one of eight awardees for the Diabetes Action Canada (DAC) Research to Action Fellowship. This groundbreaking programme empowers individuals with lived or loved experiences of diabetes to bridge the gap between research and practical applications. For me, this fellowship held deeply personal significance.
My grandfather had diabetes, but health issues were rarely discussed openly in my community. Although diabetes was part of my family’s story, I had little understanding of what living with it truly entailed. While my academic background gave me a solid grasp of the biology behind diabetes, the fellowship helped me uncover the profound human and cultural dimensions that go far beyond the science.
During the fellowship, I collaborated with a teammate to develop a project focused on culturally relevant diabetes management and prevention for Black and South Asian communities. We aimed to address the health inequities disproportionately affecting these groups by creating resources tailored to their unique cultural and systemic challenges. Through focus groups, we engaged directly with community members, gathering insights and refining our project based on their feedback.
These discussions underscored the importance of empathy, inclusion, and culturally relevant strategies. For instance, we emphasized using familiar terms like “sugar” instead of “diabetes,” explored ways to enjoy cultural dishes while managing blood glucose, and highlighted techniques like refrigerating rice to stabilise glycaemic control.
The Diabetes Canada Conference marked the culmination of months of learning, collaboration, and hard work. Presenting on a panel with the largest number of patient partners ever included in a single session at the conference was both humbling and inspiring. It reinforced the importance of centring the voices of those directly impacted by research and translating scientific knowledge into tools and solutions for real-world challenges.
Insights Beyond the Science
Through this fellowship, I gained a deeper appreciation for what it means to live with diabetes. Listening to and learning from people with lived experiences brought a new level of understanding—something no textbook could teach.
I came to appreciate the financial burden of managing diabetes, from insulin and medical devices to supplies like test strips and glucose sensors. I even tested a glucose sensor myself, briefly stepping into the shoes of someone managing this condition daily.
We explored the mental health toll of diabetes, from burnout to anxiety over fluctuating glucose levels. Conversations about topics like dating, disclosing diabetes to a new partner, and the potential link between trauma and diabetes opened my eyes to the condition’s profound psychological, social, and cultural dimensions.
A Paradigm Shift
Research is often seen as an academic pursuit, but in health, it has the power to directly improve lives and address systemic inequities. To achieve this, we must shift from treating research as a purely scientific exercise to embracing it as a tool for change—rooted in empathy, equity, and the lived experiences of those it serves.
Patient partners are essential to this transformation. By bringing invaluable lived experiences into the research process, they ensure that studies are relevant, inclusive, and actionable. This fellowship reaffirmed my belief in a “for us, by us” approach, where solutions are co-created with the people they aim to serve.
The Diabetes Canada Conference was a step in the right direction, but there is still much work to be done. To my fellow researchers, healthcare professionals, and advocates: let’s commit to prioritising equity, making space for patient partners, and using research to create a better, healthier world for all.
A heartfelt thank you to Diabetes Action Canada and CIHR SPOR Network for championing this vision. Together, we can transform how research is conducted and how it serves those who need it most.
About the Author:
Cindy Lufuluabo is pursuing a Master’s in Public Health at the University of Montreal, with a focus on health equity and improving health outcomes for marginalised communities. As the daughter of Congolese immigrants, she is passionate about culturally competent care and bridging the gap between research and practice to reduce health disparities. Through the Diabetes Action Canada Research to Action Fellowship, Cindy developed tools to improve diabetes awareness and care for Black communities.
About the Fellowship:
The Diabetes Action Canada (DAC) Research to Action Fellowship is a pioneering programme that empowers individuals with lived or loved experiences of diabetes to bridge the gap between research and action. Fellows receive training in patient-oriented research and knowledge mobilisation, collaborating with community members and researchers to develop culturally relevant and impactful solutions. This initiative represents DAC’s commitment to amplifying patient voices and fostering equity in diabetes research and care.
