November 09, 2023 Building better care for children and youth with diabetes

Who:

Dr. Shazhan Amed, head, Division of Endocrinology & Diabetes, BC Children’s Hospital; and clinical professor, University of British Columbia

Research highlights/discoveries:

• Achieving equitable, compassionate and state-of-the-art pediatric diabetes care where children and caregivers can partner to improve their health and well-being

Dr. Shazhan Amed at a glance:

• Received CIHR Team Grant: Diabetes Mechanisms and Translational Solutions for 100 Years of Insulin, for Building CAPACity for Pediatric Diabetes Research and Quality Improvement Across Canada (2022)

• Promoted to clinical professor at the University of British Columbia (2021)

• Appointed head, Division of Endocrinology, Department of Pediatrics, University of British Columbia (2019)

• Appointed clinical assistant professor at the University of British Columbia, and endocrinologist at BC Children’s Hospital (2008)

• Led national surveys to determine Canadian incidence trends of youth-onset type 2 diabetes, the first data of its kind (2006-2008 and 2017-2019)

What motivates you as a researcher?

Ever since I first learned about the connection between obesity and an increased risk for type 2 diabetes in children, I have made it my mission to help Canada’s youth live healthier lives. Through my work with provincial governments and community groups, I have improved access to healthy and sustainable resources for children. And I continue to focus on ways to improve access to diabetes-related health care for young people with type 1 or type 2 diabetes—and to provide tools and resources for youth and their families across the board.

What are some of your past projects around prevention and improving diabetes care for children?

My team and I have done research both provincially in British Columbia and nationally to determine trends of both type 1 and type 2 diabetes in children and youth. From those findings, we developed a childhood obesity prevention program called Live 5-2-1-0, as well as a BC Pediatric Diabetes Registry that allows us to track quality indicators at the clinic, health authority and provincial level that help guide interventions to improve diabetes care.

As part of the Live 5-2-1-0 initiative, we partnered with local communities across British Columbia to promote healthy behaviours among children, using the evidence-based Live 5-2-1-0 message that outlines four simple guidelines for raising healthy children. We now have a Live 5-2-1-0 App for kids, and we’ve succeeded in making the program a sustainable part of our provincial healthcare system with ongoing investment from the Ministry of Health. We’ve also had interest from other countries around the world who want to replicate our program and who are leveraging our research to help them do so.

Tell us about your latest project funded by Diabetes Canada.

Building on my experience in developing the BC Pediatric Diabetes Registry, I am one of the lead investigators on a research study called CAPACity (Canadian Pediatric diabetes Consortium), which has brought together researchers from 10 pediatric diabetes centres across Canada to create the first pediatric-focused, Canada-wide, childhood diabetes registry.

The goal of the registry is to identify gaps, improve access to care, and address the challenges that matter most to patients and families. For this study we are co-creating the registry with a diverse group, including people affected by diabetes, researchers, non-governmental organizations and advocacy groups.

The goal is for this data to be used in ways that are meaningful to youth living with diabetes and that will truly have an impact on what matters to them.

And this is the very first registry of its kind in Canada?

Although there are other diabetes registries in Canada, this is the first registry that will be focused on children living with diabetes. Almost every children’s hospital across Canada will be represented in this study.

How will the information gathered be useful?

Bringing data together gives us some more robust information to address rarer forms of diabetes in children, such as genetic forms of diabetes. Being able to compare data about benchmarks and quality indicators from one province to another also gives us the ability to share best practices and use each other’s knowledge and experience. If we do this and demonstrate the benefits of doing this, this registry could become a framework for many other diseases, too.

Are you involved in other diabetes-related projects?

This year, my research team and I received funding from the CIHR [Canadian Institutes of Health Research] and JDRF [Juvenile Diabetes Research Foundation] for a project focused on digital innovation in pediatric diabetes care. We’ve co-created—with patients, families and diabetes healthcare providers—a mobile app called TrustSphere that provides a single, trusted digital platform where parents, families and healthcare providers can view data and collaborate on chronic disease management. This app allows patients, caregivers and clinicians to go to just one place to find all the data that comes from children living with diabetes through things like their insulin pump readings and glucose sensors. Patients can also use the app to get access to recommendations from their diabetes team, educational resources, lab investigations, and more. We want to demonstrate the power of data in allowing for more personalized clinical care. I truly believe we are not going to be able to move the needle on big issues in healthcare access or improve health outcomes without technology.

The last word

“With almost every children’s hospital across Canada represented in Dr. Amed’s research, the first pediatric-focused, Canada-wide, childhood diabetes registry can spur meaningful change on a systemic level,” says Laura Syron, president and CEO of Diabetes Canada. “With this data, we can champion improved care for children and youth living with diabetes, based on what matters most to them and their families.”

Did you know?

When children are young, parents need to be very involved in learning about the condition, participating in the routines and sharing management decisions. As children get older, they learn how to care for themselves, but parents still play an important role in the diabetes care team. Learn more in Kids, Teens & Diabetes. Help us fund research like that of Dr. Amed, which has the power to change lives. Donate now.