Indigenous youth living with type 2 diabetes (T2D) face a higher risk of developing kidney disease as adults, but a unique research initiative out of the Can-SOLVE CKD Network is working to change that.  

The iCARE project is helping health care providers by implementing a unique tool to monitor kidney health more accurately in this population, with the goal of preventing kidney failure in adulthood. Led by a passionate team of researchers working collaboratively with youth and their families, iCARE combines clinical innovation with youth-led awareness efforts.  

As part of the project, young patient partners with T2D are creating video content—in the form of TikToks—to raise awareness about kidney health. By centring the voices of Indigenous youth and their families, the iCARE team is advancing real-world solutions that reflect the values and priorities of communities most affected by diabetes and kidney disease.  

Helping clinicians monitor kidney health in youth 

Early detection and treatment of kidney disease can slow or even prevent its progression. “Having an accurate estimate of patients’ kidney function when we see them in clinic is really important to guide therapies and to follow [their kidney health] over time,” says Dr. Allison Dart, a pediatric nephrologist and professor at the University of Manitoba who co-leads the project.  

In Phase 1 of the iCARE project, the team developed a new equation that doctors can use to estimate kidney function in youth with T2D. The tool uses factors such as age, sex, body size, and serum creatinine levels to determine how well the kidneys are filtering the blood. 

While the tool has proven effective, the researchers needed to determine the best way to support its use in clinical settings.  

Gaining traction in clinics 

Based in Manitoba, the iCARE team integrated its equation into the electronic medical record system of nephrology clinics as part of their earlier work. But most youth with T2D are seen by pediatric endocrinologists—specialists who don’t typically use the same systems. This led the researchers to explore other ways to get the tool into the hands of the doctors who need it. 

A major step forward came when the Pediatric Endocrine Society—one of the largest endocrinologist groups in North America—agreed to distribute a survey from the research team to more than 100,000 of its members across the U.S. and Canada.  

Dr. Brandy Wicklow, a pediatric endocrinologist and professor at the University of Manitoba who co-leads the iCARE project, says the results of that survey offered valuable insights into the challenges endocrinologists face in adopting the tool and what supports could make it easier to use.  

One key challenge the team identified was a lack of understanding around what additional benefit the iCARE tool has over screening for urine protein in pediatric patients. In response, the research team is launching a new study to build a prediction tool that includes the iCARE equation to predict changes in kidney function over time, especially as teens transition to adulthood. The results will inform updates to pediatric guidelines—offering endocrinologists clear, practical direction on how to both assess and protect kidney health in youth with T2D.  

“Doctors can easily adopt guidelines to provide the best care possible for their patient at any given time without a whole lot of extra work,” explains Wicklow.  

The iCARE team is also exploring how to make the tool more accessible—for example, by integrating it into a clinical app that doctors already use. “We initially thought about a website,” says Dart, “but after doing the interviews [with doctors], we realized that something they already use during clinical encounters would be more easily adopted and practical.” 

Raising awareness among youth 

Throughout the project, Indigenous youth and their families have provided valuable guidance on the direction of the work. So, when it came time to raise awareness about kidney health among young people living with T2D, it was no surprise that they came up with a creative and relevant approach—creating videos for TikTok.  

Onalee Garcia-Alecio, a youth from Berens First Nation in Manitoba, has been working on the iCARE project as a patient partner for about 10 years. She hopes the videos will help her peers learn how to talk to their doctors about kidney function and the iCARE tool, while also sharing powerful and relatable personal stories from Indigenous youth and their families about living with diabetes and kidney disease.  

Onalee notes that this project is especially meaningful for Indigenous communities, where rates of diabetes and kidney disease are high, and negative experiences with the health care system are common. 

“For me, I would say [this project is] healing the bridges between health care and Indigenous communities,” she says.  

Onalee Garcia-Alecio, one of iCARE’s youth patient partners

Her goal with this work is to make a positive difference in the lives of her peers. “I want them to be okay with asking for help with their diabetes and saying that they have diabetes—getting rid of the stigma,” she explains. “You can live well with diabetes.” 

To learn more about the iCARE project, visit their website.