Patient Advisory Groups in Diabetes Research: A Caregiver Perspective
By: Leanne Dunne
Tags: Diabetes, Patient Engagement, First Nations, Health, Kidney Disease

Patient Advisory Groups in Diabetes Research: A Caregiver Perspective

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. Put simply, iCARE is an observational clinical study designed to address the high rates of kidney damage in youth living with type 2 diabetes (T2D). Beyond biological risk factors, this study is also exploring the psychological and social risk factors associated with kidney damage in youth with T2D.

What can patient engagement look like in reality? We’ve previously shared two blogs that highlighted patient engagement within iCARE study’s patient advisory group. Dr. Brandy Wicklow (a co-principle investigator for iCARE) talked about the logistics of starting an advisory group (read it here), while Shayna Quoquat shared her perspective as a youth advisor (found here). In this post, we share the perspective of a caregiver involved in this study: Jackie McKee (co-chair of the iCARE advisory group), who both lives with T2D and cares for her child living with T2D.

Can you tell us about yourself, and how you got involved in health research?

“It all started when my son was diagnosed, two months before his 13th birthday. I’ve been very familiar with type 2 diabetes in my family, my grandmother and mom both had it. I was diagnosed myself 5 years ago.

Arlene, the nurse in charge who works in Waywayseecappo First Nation, asked if my son and I would be interested in joining this advisory group. My son couldn’t join in the end, but I did and I’ve been with it ever since.”

How has this role been valuable to you?

“It has given me a forum to say how I feel, my concerns and issues with diabetes. But the biggest thing is that I now feel like I have a voice, one that reaches a larger audience.

One of the biggest things when we first started was establishing trust between parents, kids and researchers. Trust has to be established with the healthcare workers in the system. A lot of people have talked about not feeling empathy from their doctor outside of the clinic.

I think trust is there now with the group and researchers, it has evolved. When we first started these meetings, it was common feelings that bonded us. There is constant worry as a parent when your child has type 2 [diabetes]. Even though we (the iCARE advisory group) have been in existence for almost 3 years and we’ve only met a handful of times, it feels like we’ve been together for a long time.”

How has the voice of the iCARE advisory group impacted the iCARE study?

Editor’s note: issues in mental health was identified as an important risk factor by the iCARE advisory group, leading the research team to incorporate and measure this within their study.

“Mental health is something that the researchers are now focusing on within their study. To me, mental health support is just as important as the medicine.

As a group, we’ve looked at the types of questions they now ask in clinic to find out more about people’s current mental health support, and provided advice around what and how they should be asking patients these questions during their visits at clinic. Now we’re talking about elder support in clinic and ways to increase support for patients.

Sometimes it feels like we’re not making an impact. But I watched a clip on the news that featured the iCARE study the other day with Allison and Shayna (note: Dr. Allison Dart is the other co-principle investigator for iCARE and Shayna is one of our youth advisors). Allison had mentioned how they were now incorporating mental health in the study and within clinic. When I heard her say that, I thought “someone’s heard us”. We as a team have contributed to diabetes in that way.”

What challenges have you faced within the iCARE patient advisory group?

“In our group we have two types of people: ones that are more vocal, and ones that are quiet. I’m one of the ones who talks. Some people express themselves differently, like through art. But I think sometimes it’s hard to have discussions because not everyone has been able to share how they’re feeling. The other challenge is having a consistent core group. Once the youth are finished high school they sometimes leave the group because they have changed directions in their lives with either attending school, or have entered the work force.”

What are the key things you’ve learned?

“The biggest thing I’ve learned is the increased risk kids with type 2 diabetes have have in terms of kidney problems by the time they’re in their 30’s. It scared the hell of me because that’s where I see my son heading. Kidney problems equals dialysis in my opinion.

It’s also understanding how big this is, kids getting type 2 diabetes. I do this work because I don’t want another parent to go through this. You can’t imagine this unless you’ve gone through it. It’s not necessarily inevitable that your child will get diabetes.

The other thing I learned is about the misconception that type 2 diabetes is 100% preventable. Which is not the case! Contrary to popular public belief this is not the case. There are many factors involved, including a hereditary factor.

This issue is beyond this group and the iCARE study. So many people and different departments within our healthcare system need to get on board to stop this.”