Youth, researchers and clinicians collaborate to shape diabetes care transitions

This story was originally posted by the Institute for Better Health at Trillium Health Partners. Read the original post.

For youth living with type 1 diabetes, the move from paediatric to adult care can be overwhelming. This transition is often marked by increased hospital visits, poorer blood sugar management, and delays in connecting with adult care providers. To address this, a new research study, funded through a prestigious Healthy Youth grant from the Canadian Institutes of Health Research (CIHR), is putting young people at the forefront of change. 

Co-creating a Community of Practice 

Researchers from The Hospital for Sick Children (SickKids) Research Institute and the Institute for Better Health at Trillium Health Partners, alongside youth, diabetes care professionals, and community partners from across Ontario, are conducting a study to co-create a “Community of Practice” designed specifically with and for youth living with type 1 diabetes. 

A Community of Practice is a model where people with shared goals come together to exchange knowledge and improve practices. While this approach has shown promise among health-care providers, this project uniquely embeds youth in designing and leading the work. 

“As clinicians, we often see the challenges that young people face when moving from paediatric to adult diabetes care,” says Dr. Rayzel Shulman, the Nominated Principal Investigator and Staff Physician and Scientist in the Child Health Evaluative Sciences program at SickKids. “This project places youth at the heart of designing solutions. By empowering young people to co-create their care experience, we are laying the groundwork for smoother transitions, better health outcomes, and a model that truly listens to and learns from youth voices.” 

The team will collaborate with youth, as well as paediatric and adult diabetes specialists to co-design the Community of Practice model and training materials. These resources will equip young people and providers to work together more effectively during the transition period. The study will be supported by and roll out across the Ontario Pediatric Diabetes Network, comprised of 35 paediatric diabetes clinics across the province. Clinics will either continue current practices or adopt the new youth-engaged Community of Practice model, allowing researchers to compare youth outcomes. 

Youth-centred research for better health outcomes 

“Youth are deeply embedded through the entirety of this research study,” says one of the Principal Investigators Dr. Ian Zenlea, Clinician Scientist, Institute for Better Health, and Pediatric Endocrinologist, Trillium Health Partners. “From the earliest stages of design, young people with type 1 diabetes will shape the direction, ensuring the Community of Practice model reflects their real-world needs and priorities.” 

Youth partners will play integral roles as advisors, co-designers, and co-researchers throughout the entire project. Two youth, Ethan Parikh and Alina Siddiqui, are embedded as Principal Investigators on the team, ensuring the work is wholly youth-centred from design through implementation.  

“Engaging people with lived/living experience as co-researchers is an incredibly powerful tool to ensure study outcomes are appropriate for the communities they are being designed for,” says Ethan Parikh, one of the Youth Principal Investigators. 

Researchers will measure outcomes such as how confident youth feel about moving into adult care, their attendance at adult diabetes appointments, and their blood sugar management. They will also track hospital visits and explore how youth engagement shapes care delivery over time.  

“There is an urgent need to engage youth in designing and implementing transition programs that consider important factors like the social determinants of health, as well as other youth-driven priorities,” says Parikh. 

The project is guided by Canada’s Youth Policy, which emphasizes youth leadership and well-being. It also underscores the importance of partnerships across institutions and communities. 

Rooted in partnerships 

The research team is also partnering with Ontario’s Better Outcomes Registry and Network (BORN) to leverage data collected in the Ontario Pediatric Diabetes Registry to support the project. By incorporating patient-reported data on transition readiness and health outcomes, BORN will help ensure that the experiences and voices of youth with diabetes are reflected in province-wide data systems. This collaboration not only supports the project’s research goals but also lays the foundation for more consistent, youth-informed transition care across Ontario.  

“Our engagement with youth and community organizations throughout this project will help raise awareness of, and facilitate access to, non-health related community services for youth which are already available,” says Dr. Shulman. “From employment and peer support to social support, these services are integral to a healthier transition for youth with diabetes.”  

As the study gets underway, the team envisions it will serve as a model for other chronic conditions where youth face complex transitions in care. 

“This is about creating health care that meets the needs of young people,” says Alina Siddiqui, one of the Youth Principal Investigators. “When we’re listened to, we see better solutions, and better health outcomes.”