Author: Linxi Mytkolli

This is part seven in our series by Patient Partners about their experiences at our recent workshop.

About Katie: Katharine (Katie) Mackett has lived with type 1 diabetes for 25 years. She is a PhD candidate in Clinical Epidemiology at McMaster University (Hamilton, ON) researching equitable access to evidence-based care for individuals living with diabetes. With DAC, Katie is a patient partner who served on the workshop planning committee. She is also an advocate with Diabetes Canada for improving access to continuous glucose monitoring.

Living with diabetes can be relentless, unforgiving, and distressing. With misdiagnoses, poor media representation, complications, inadequate access to life-sustaining medication (to name a few), it is clear there is a lot to be learned about this disease. However, living with diabetes also instills a great deal of strength and determination, which is evident in patient partners.

Partnering with individuals with lived expertise provides researchers a unique lens into the disease they are analyzing. Without meaningful and ethical engagement, it can leave the patient partner feeling as though their voice is unimportant and that their concerns do not carry any merit.

During the DAC 2024 Workshop, “Patient Partners as Agents of Change”, name badges were worn without titles or designations, creating a space for individuals who possess a wealth of knowledge and experience living with diabetes (from newly diagnosed, parents with children living with diabetes, caregivers, to those who have decades of lived expertise), to freely connect with researchers, clinicians, and other stakeholders. I had the opportunity to not only discuss current projects with researchers, but also share my experience living with type 1 diabetes, and how their research impacts me. They echoed the value of engaging patient partners throughout the research process, and we had open dialogue about what meaningful engagement entails. We discussed important considerations such as the type of research to be conducted and the patient partner’s level of comfort with the topic. It was acknowledged that the views of just one person living with diabetes may not represent all the values and concerns of others living with other types of diabetes, emphasizing the importance of including a diverse cohort of patient partners.

Having the opportunity to connect with other patient partners from across Canada was encouraging, and reinforced the fact that we are truly not alone. Our passion and dedication towards improving the lives of those living with diabetes was palpable. We have so much to learn from each other, insight that cannot be learned from a textbook.

I encourage those researching chronic diseases such as diabetes to reach out to the community and collaborate with organizations like Diabetes Action Canada to learn about the lived experience perspective, and engage in meaningful research that will impact generations to come.

This is part six in our series by Patient Partners about what they learned at our recent workshop.

By Maryann Maloney

About Maryann: Maryann Maloney As a Patient Partner with Diabetes Action Canada, I’ve been given the opportunity to have a voice that connects both my passion for helping others and the type 1 diabetes I’ve lived well with for 45 years. I live, work, and play in the east end of Toronto. Fun fact: I was voted “Best Laugh” in high school.

Fact: Indigenous people experience a lack of cultural understanding in our health systems.

As a Patient Partner at Diabetes Action Canada, I attended a workshop entitled “Cultivating Equity: Advancing Anti-Racism in Healthcare.” It blew my beliefs out of the water, the clean water that I’m privileged enough to have access to.

I introduced myself as Canadian and, by the end, I was embarrassed about that flippant self-description. During discussions with my new friends, I was able to challenge my own views about racism. This was the beginning of a journey that opened both my mind and my heart. Was I contributing by being complacent about the subtle racism surrounding me? Absolutely!

My own judgments are skewed by my limited knowledge of the prejudices within our healthcare system that affect Indigenous communities. As a retired healthcare professional, this was eye-opening.

My mind is filled with so many thoughts and questions that it’s easier for me to break it down. I’ll stick to the top three.

Question: Can we appreciate our differences and acknowledge that change can happen?

“Made a friend today and we connected. We communicated like we had known each other forever. She didn’t think my questions about her life were weird. She answered them respectfully, with clarity and grace, which is exactly how she portrayed herself. She is a lovely human being named Leslie, and she is Indigenous.”

I had never heard of generational trauma before this workshop, but I know what it is now. I know now that we must learn to understand each other to help find some equilibrium in the system that works best for everyone. If we can address our own prejudices, then we can avoid the familiar rabbit hole of discourse. When I walk into a healthcare environment as a white woman, I’m treated fairly. Every person deserves that same treatment. What judgment are you holding when someone “different” interacts with you?

Question: If we’re not calling others out on their racist comments, are we culpable?

“Chatted with Barb today. We talked about her family. Her grandson wasn’t well and she was concerned. Barb’s granddaughter was at the workshop. We shared stories. She was going home early. Barbara Nepinak is an Indigenous elder at Pine Creek First Nation and has too many accolades to mention. Barb is my friend.”

Is a dedicated nurse working with an overworked physician who doesn’t have time to talk to a struggling Indigenous patient with diabetes a racist? I don’t think so, but the system they work in perpetuates this problem. One probably wanted the best for the patient; the other wanted the patient out. Was the conversation at coffee about non-compliant Indians in a predominantly Indigenous community? If you’re listening and not addressing comments, then you’re contributing. Saying nothing is doing nothing. Call it out when others may not see the racist path they are taking.

Healthcare is a challenge for the Indigenous community. The inequalities within the system are historically grounded. It takes a long time to change things, but together we can. Healthcare, clean water, and housing are all basic human rights. Isn’t that what everyone deserves? I grew up entitled to this. The Indigenous community grew up fighting for that. My understanding of that concept was based on my own beliefs about how much I actually knew about the Indigenous community—nothing!

Question: If you’re not challenging your own beliefs about racism, are you helping or hindering?

“Barry opened the workshop speaking with passion and love for his community, people, and his land. He’s also a very nice person who I now consider a friend. Dr. Barry Lavallee is a member of the Métis community of St. Laurent, Manitoba, and a descendent of Duck Bay and Lake Manitoba First Nations. He received his medical degree in 1988.”

Until we start challenging ourselves, nothing will change. Every one of us holds beliefs that we base decisions on. How can we change them? Is the Indigenous person on the stretcher drunk, or is their blood sugar low? Is an Indigenous person waiting for a helper from their community taking up hospital space or entitled to that privilege? If you have an alphabet of letters after your name, are you above showing discrimination? We can start by showing respect and understanding in all interactions. Do you believe that every person has value and is worthy of respect? I do, and it’s a mantra worth repeating.

“Be kind, be gentle.”

By Terri MacDonnell

This is part 5 in our series of blog posts written by Patient Partners about their experience at the Diabetes Action Canada Workshop.

About Terri: Terri MacDonnell has been a T1D for going on a pump and sensor 2 years ago. Feeling going on a pump and sensor 2 years ago. Feeling isolated during the pandemic, she heard about DAC from her endocrinologist and quickly joined the organization to feel a sense of contribution and connection. She lives in Toronto with he rescue bunny Lola and forages for her favourite weeds daily to stay active and help keep stress in check.

Privilege – it’s not about what you have, but what you haven’t had to go through.

Recently, someone told me that I couldn’t understand what they were going through due to my “privilege.” Of course, their remark stung – and the only response I could mutter back was a feeble “Well, do all of your organs work?” But their flippant comment stayed with me the rest of the day. This person didn’t know me, and they certainly didn’t know what we, as people with diabetes, go through every day in trying to live healthy, normal lives. I wasn’t looking for sympathy; I only wanted to express that you can’t base your assumptions or opinions on visible criteria alone.

Sometimes privilege means never having to pay out-of-pocket expenses for pump supplies, counting carbohydrates before meals, or wondering if you’re going to suffer from retinopathy due to poor decisions you made earlier in life.

This concept of privilege was thoughtfully explained by the Indigenous Patient Circle during DAC’s Workshop Event – Cultivating Equity: Advancing Anti-Racism in Healthcare. Their team provided the best definition of privilege I’ve heard: “It’s not about what you have, it’s about what you haven’t had to go through.” This group then brought their unique perspective of how they, as Indigenous people, are treated differently in our Canadian healthcare system. They often feel like they have done something wrong to be suffering from diabetes and feel like they are talked down to based on their lack of medical knowledge or education.

The anti-racism discussion also included a comprehensive graphic outlining the different kinds (or segments) of racism that people face – many of which I hadn’t fully contemplated. Often, people only address the physical characteristics when making assumptions about someone’s power or privilege. This wheel clearly shows not just the types of advantages people have but also the degree of power or marginalization that comes from having those specific traits.

When it comes to healthcare, communication is often directed towards those who are considered to have the most power. Even at the community level, healthcare providers often lack the tools or language needed to help marginalized individuals understand their conditions and treatment options. Plus, the cost and access to medications and therapies best serve those who have full health insurance and who live in large city centres.

While we’re moving towards a more equitable society, we still have a way to go in providing the same services to everyone in Canada. How can we properly empower all people with diabetes when we’re still being labeled by our individual levels of power and privilege? This DAC workshop shed light on this topic and how we can dissolve the stigmas that hold people back from making real progress.

By Ryan Hooey

This is part four in a series of blog posts written by Patient Partners about the Diabetes Action Canada Workshop.

About Ryan: Ryan Hooey: A person living with Type I Diabetes for 30 years. An advocate for the affordability, availability, and accessibility of diabetes management technology for all. Located in Windsor, Ryan has been a Patient Partner for approximately 3 years. Fun fact: I wish that items created to treat low blood sugar tasted terrible so I would not want to eat them.

This was a conference like no other. It was unique in several different ways. For starters, no one had any identifying credentials on their name tags, so the conversation flowed naturally without any intimidation of titles. This was a breath of fresh air, as whether it be a group setting or one-on-one with a scientist, researcher, or endocrinologist, patient partners did not have to feel overwhelmed to speak the truth or share how they might not be the “perfect” person with diabetes. It was evident that real conversations were taking place all over the conference between people from all over Canada, speaking about their journey with diabetes.

Another thing that differed from other conferences I have attended was the notion that patient partners were the focal point, and all the breakout sessions, group discussions, and events were geared towards patient partners with lived experience. This extended right down to the menu and timing of the agenda to allow attendees to bolus without worrying about lag time and a rollercoaster of blood sugars.

I absolutely loved the connection to Indigenous culture and their representation within the diabetes community. There were so many group discussions and even a culturally respectful gathering the evening before the conference started regarding racism. Hearing the thoughts from those who attended this was so thought-provoking. A few times during this, I heard that this was the first time someone felt comfortable speaking in this forum.

Another experience that was a first for me was the session about homelessness and diabetes. I never knew this was such a critical issue so many are experiencing. There was a film shown to the entire conference, and I felt like this was a very real portrayal of the difficulties facing people who are homeless and live with diabetes. I would urge you to check it out if you have not seen it. The cost of food for those seeking shelter was a real concern in this film, yet something I would have never considered.

On the final day of the conference, myself and two others were awarded the DAC Catalyst For Change award. I want to congratulate the others who won this award because you are doing fantastic things in the world of diabetes. For me, this was humbling, and it gave us the chance to speak about how important having patient partners be a part of your research or project is. Living with diabetes is different for each and everyone out there who manages this daily. We never get a day off, whether it is a Wednesday or your birthday, we have to make a million little decisions that ultimately will affect our blood sugar levels, maybe even several hours into the day. Being able to express this alongside the two award winners who have had very different journeys than myself was an honor.

As a person living with diabetes, you can come to the table with so many questions, concerns, and essentially problems. But you become a patient partner when you come with those concerns but also a solution.

By Shayla Hele

This is the third in our series of blog posts, written by Patient Partners, about their experience at the Diabetes Action Canada Workshop.

About Shayla: My name is Shayla Hele. I am 26 years old and have been living with Type 1 Diabetes for 19 years. I have been a part of the Collective Patient Circle at Diabetes Action Canada since 2016. I currently live in Halifax, Nova Scotia, and I love dirty chai lattes.

I have been attending the Diabetes Action Canada (DAC) conferences since the first conference in 2017. It is almost intangible how far we have come since then, with substantial progress being made every year. For myself, what made this conference a particular success was the incorporation of research using art and creativity as a means of conveying qualitative data. The Reshape T1D Collection, the film Low, and the Home Sweet Home(less) photo exhibit were individually and collectively phenomenal. I have never felt so engaged at a DAC conference as I did with each of these pieces. I believe this is in large part a result of the direct involvement of individuals living with diabetes in the development and implementation of these projects.

I am not a researcher, bear in mind, but from my understanding and experience, the consequences of research often go unseen or take years to create meaningful change. These projects, in contrast, felt as though they held direct impact. Perhaps they cannot amplify the rate of change in policy, but from how they made me feel, I am hopeful they will. I believe that art offers a vulnerability and personability that speaks louder than numbers and conclusions. When there is something more tangible than a piece of paper driving actions, I believe we may see different outcomes. I believe this also holds true in terms of knowledge mobilization, which is something I know DAC has been working to amplify since its outset.

All this is to say, I felt profoundly moved and motivated by this conference. In previous years, I have found it difficult to hold my attention while researchers presented their projects, discussing protocols or outcomes I did not understand, could not see the implications of, or could not directly relate to. This deterred me from meaningfully engaging with poster presentations and researchers one-on-one because I felt I did not know how. This year felt different, and it was refreshing. It felt as though in every project being presented, both qualitative and quantitative, I could see myself (or someone else with lived experience) shining through. This created space for me to connect with each project; the outcomes, the patient partners, and the researchers; and it felt empowering and exciting.

I am very proud to be a part of this organization and to have had the opportunity to watch it grow into something so powerful. I am thankful to have been given the opportunity to use my voice and be heard. I am also very grateful to all the other folks with lived and loved experience for sharing their expertise. I also thank all the folks at DAC who have worked and who continue to work tirelessly towards our shared goals.