iCARE Patient Advisory Group
The patient advisory group was created from participants that took part in the iCARE study. This group includes not only patients, who are youth living with type 2 diabetes, but also parents/caregivers. This group was created to provide direction for this research team and helped to establish the importance of mental health and its effect on type 2 diabetes, which otherwise may not have been explored. This group has also provided a safe place for members to share their feelings and struggles of having type 2 diabetes.
"The advisory group is really critical to ensure that mental health is a component throughout. They give us a lot of feedback about the measures that we use to help us decide which ones we should be using and what's appropriate."
Dr. Allison Dart (co-investigator for iCARE)
iCARE Advisors (youth)
Shayna
"I’m from White Dog Ontario, but I grew up in Winnipeg. I’m Ojibwe. I was diagnosed with type 2 diabetes when I was 9 years old. Diabetes runs in both sides of my family, but I’m the only one out of my siblings that has diabetes (so far).
The advisory group is a comfortable and welcoming place. I can share and talk to others about the story of what it feels like to live with type 2 diabetes and share ideas that would be helpful for youth living with diabetes in the future."
Sydnee
"I live in Winnipeg and i’m Oji-cree. Type 2 diabetes started with my grandmother and grandfather. Then my mom and 2 of my aunties were diagnosed, and then me.
I love being a part of iCARE, I like the support it gives me and the help to understand more.”
Mario
I live in Winnipeg and I’m of Jamacian descent. My great grand-mother had a leg amputation because of diabetes, and my mom had gestational diabetes. I got diagnosed with type 2 diabetes when I was 12.
I like being a part of the iCARE advisory group because it has a family atmosphere. I like being around people that can relate. If I had high blood sugar that day, they could relate and could help.”
iCARE Advisors (caregivers)
Jackie
"I live in Waywayseecappo First Nation. I’m Ojibwe with Irish de-cent and I am a mother of 5 children. I was diagnosed with Type 2 diabetes 5 years ago and many of my family members live with this disease - but I do not let this disease define me.
As the co-chair of the iCARE Advisory Group I am very passionate about this research. I have been given a rewarding opportunity to contribute in a meaningful way to assist in the direction of type 2 diabetes research.”
Tiffany
“I grew up in White Dog, Ontario but now I live in Winnipeg. I’m Ojibwe.
Three of five of my siblings are diabetic. I was diagnosed when I was 22. Now one of my daughters is diabetic.
The iCARE advisory group is a comfortable environment, people make you feel welcome. My daughter can talk to other youth with diabetes, she’s not alone. She’s able to talk to others who have diabetes.”
Laura
“I grew up in Garden Hill but now I live in Winnipeg. I am Oji-cree. My mom had type 2 diabetes and died from kidney failure. I had gestational diabetes when I was pregnant. It went away but then I got re-diagnosed 2 years later. My daughter was diagnosed when she was 12, and my other daughter was diagnosed when she was 30.
I joined the ICARE advisory group because I want to help other parents. I like hearing about others and helping each other.”
Accomplishments
This book was written by teens and young adults living with type 2 diabetes (T2D) in Manitoba and Northern Ontario who are patient partners in the iCARE Study.
This book provides facts about type 2 diabetes and ways to help manage it.
This book shares the stories of young people who live with type 2 diabetes, and stories from their family members.
This book is a reminder that you are not alone.
This group worked together to create a video on what it is like to live with Type 2 Diabetes. Watch below or visit the CHRIM YouTube page.
There are current blog posts about our patient advisory group, from the perspective of one of the co-investigators on the team, Dr. Brandy Wicklow (@bwicklow1), from one of the caregiver representatives, Jackie, and also from one of the youth, Shayna. These posts are by Leanne Dunne - Knowledge Translation & Patient Engagement health researcher for @DEVOTION_MB. Click on the links below to view the 3 blog posts!
Updates
Stakeholder Advisory Group
Our stakeholder advisory group is made up of a variety of members from Manitoba in order to help guide our research in a direction that is important to the population being studied, and to help ensure that the data collected and results are relayed back to communities and participants. We also aim to create relationships with the communities that take part in the research and truly give back. One of our main goals is to make changes that enhance the health and well-being of those living with type 2 diabetes.