As a Knowledge Exchange Coordinator for the Developmental Origins of Chronic Disease in Children (DEVOTION) Network, my work supported stakeholder and patient engagement. One example is a patient advisory group for the Improving Renal Complications in Adolescents with Type 2 Diabetes (iCARE) Cohort study. This advisory group is made up of Manitoba youth living with type 2 diabetes and their caregivers, most of whom are indigenous (reflecting the fact that indigenous people are disproportionately impacted by diabetes ).
The advisory group meets five times a year to discuss research priorities, provide feedback to the researchers, and share the latest study results — a great example of integrated knowledge translation or ‘iKT’ (for more info, check out Leah’s post on iKT). They recently made a video to share what it’s like to live with type 2 diabetes, and are currently working on a booklet as a way to support newly diagnosed kids.
I sat down with Dr. Brandy Wicklow, a researcher on the iCARE project, to learn more about how this group got started and her experiences with patient engagement.
How did the iCARE participant advisory group get started?
Diabetes research has been happening at the Children’s Hospital Research Institute of Manitoba (CHRIM) since the 1980’s and we’ve had a long standing relationship with communities across northern Manitoba, like St. Teresa’s Point, Thompson, and the Pas. We knew that rates of type 2 diabetes were increasing in youth living in the north, but we didn’t have a formal way to look at the reasons why.
Our research team (Diabetes Research Envisioned and Accomplished in Manitoba or DREAM) formed a stakeholder advisory group about 10 years ago to build relationships with indigenous community members, local leaders, and knowledge keepers that were interested in diabetes. We had no funding, but it was really important to sit at the same table and work together to find solutions.
When iCARE began we were looking to the stakeholder advisory group for advice on how to improve the health of kids living with type 2 diabetes. They in turn helped us to recognize that it was more important to talk to the kids themselves. Kids have a lot of autonomy in the communities we were visiting, and their own unique perspectives. We were missing that voice in our research.
We didn’t have the finances when we started the iCARE patient advisory group. We needed to involve people with lived experience in our research and talked about the idea for about 6 months until we recognized that we couldn’t wait any longer for funding. It was a bit of “if you build it, it [funding] will come.” So we cobbled together funding from different sources, wherever we could find it.
We started by recruiting youth (aged 14–18) from our clinic. We tried to find kids that we knew felt pretty comfortable talking with us and lived in Winnipeg. We chose people from Winnipeg originally because we didn’t have any budget to bring in people from other communities. Eventually funding opportunities became available, like Canada’s Strategy for Patient Oriented Research (SPOR). That’s helped us to support this group since.
What are the key things you’ve learned so far?
Relationships and trust take time and effort
At our first iCARE meetings, we (the researchers) would show up to do an overview of our findings and then leave afterwards. Then we realized that we had to figure out how to be there, because it’s valuable to be fully a part of these meetings and connect as much as we can.
Expectations go both ways
It’s typically been the physicians telling our patients what we expect of them but these kids also have expectations of us and we need to ask what those expectations are. That’s part of having people be involved in and advising research.
Research and clinical care aren’t two different things — they’re one and the same.
Everything is research at the end of the day. It was important to find young advisors who had experience with clinical care because their voice contributes to research that will impact how we take care of youth in clinic.
When we started to involve patients in our research, we started to understand how big of a priority mental health is.
Prior to starting this group, there wasn’t a focus on mental health in our research. We were looking at things like blood pressure and A1C [glycolated hemoglobin] levels, but we weren’t asking people about their family or support, for example. We weren’t asking about community level factors or life factors, and we weren’t measuring these things. Now we realize that these things should be linked within our research. These kids have really good ideas and they’ll let you know their perspective, whether it’s through telling a story, creating art, or some other way (like the iCARE video mentioned earlier).
What have been the biggest challenges so far?
The biggest challenge is the ability to get everyone in a room. Everyone has competing priorities, kids are in school or they have jobs. There are also logistical challenges with location. We have to expand and have more representation from other communities in Manitoba, but people don’t want call in from Skype. People want to physically be there. Communicating in person is key. But we need to balance things financially with what we have.
What is your hope for the future of this advisory group and the kids that you work with?
Ideally, it would be that our advisory group continues to grow together. That hopefully one day the youth from this group will inform the next phases of the study design and implementation. I hope the youth will feel more confident in sharing their ideas. That this experience will help them when they go to school, or that they might want to be involved as a research coordinator on our team one day, or become an Indigenous scholar. On a personal level, having these connections is important. It’s very rewarding.
- Yu CH, Zinman B. Type 2 diabetes and impaired glucose tolerance in Aboriginal populations: A global perspective. Diabetes Res Clin Pract, 2007;78:159–70.
About the Author
Dr. Brandy Wicklow is a pediatric endocrinologist and child health researcher at the Winnipeg Children’s Hospital and CHRIM. She completed her pediatric studies in Manitoba in 2006 and studied Pediatric Endocrinology at McGill University until 2009. She provides clinical care to children with type 2 diabetes from all over Manitoba and travels to Opaskwayak Cree Nation (OCN), Island Lakes and Thompson to provide clinical care in these communities. She has a 3 year old Weimaraner named Molly who keeps her busy outside of work with running, hiking, and swimming.