This is part two in our series of blog posts written by Patient Partners about their experience at the Diabetes Action Canada Workshop.
About Sasha:Sasha Delorme is a happily married Métis woman with two sons and two stepchildren. She grew up in a small town in Saskatchewan with her mother, who was adopted through the 60s Scoop, so she is learning about Indigenous culture as she works on projects and speaks about life with diabetes. Her son has type 1 diabetes (diagnosed at age 2 in 2014), and she has type 2, diagnosed in 2020.
Sasha has spoken at several events, helped plan many diabetes related events in her city for Diabetes Canada and JDRF, done grant reviews, contributed to the work of published scientific projects, and recently helped plan and host an anti-racism in healthcare workshop. She works closely with the Indigenous Patient Circle in Diabetes Action Canada as well as the Collective Patient Circle, always eager to help shape diabetes research. She has been on the DAC steering committee, Sex and Gender research committee, and knowledge and mobilization committee. She is currently a steering committee member for CommuniT1D, a mental health initiative for people living with T1D.
Sasha is starting a new position as Research Coordinator for the CanScreenT1D project and will be visiting Indigenous communities while she works with her fellow IPC members.
This year, 2024, I was reminded that I’m no longer at the conference sharing just my experiences as a mom/caregiver to my son with type 1 diabetes. I’m also there as a woman with type 2 diabetes. I hit my first scary low in a long time and, of course, it ended up happening right before my group’s presentation. I walked through the big doors to the area near the elevators and realized in that moment that I was really low. The second I realized… Linxi popped up and saved the day. She asked me how I was, and I said “low.” She panicked and found me some candy and fruit snacks, then waited a good 15 minutes to make sure I was okay. Not all heroes wear capes. Thanks again, Linxi!
I ended up nailing the speech (or so I thought in my haze, lol), and I know it’s because of the confidence I’ve built over the years, working for this organization and attending these conferences.
That being said, I have been to at least five conferences and this one was by far my favorite. All the details really made it epic. The menu was sent via email with carb counts so people could give insulin knowing the amount, there were no accolades on the name tags which made it easier to approach someone and ask how they’re involved with DAC. The “speed networking” session where we had the chance to meet people we otherwise may not have, and the family photos of DAC administration added a human element I found was lacking in other conferences. Showcasing the work that has been done and the results that have come from projects advised by patient partners was great to see. We need to share more of that news between our peers.
The hotel was beautiful and clean, and the food was really good. I enjoyed the breakout sessions and the length of the presentations were perfect, not too long. People were meeting each other for the first time since Zoom meetings became a thing, and everyone seemed happy to be there.
I left the conference feeling confident and ready to tackle more work with amazing people. I felt valued and safe, and it’s important for me to be in those kinds of environments. Thank you for all the hard work you put into this year’s meeting. A+++!!!
Several of our Patient Partners provided blog posts about their experience of the recent Diabetes Action Canada Workshop. We’re excited to share them with our community. Here is the first in the series, from Patient Partner and Research to Action Fellowship award winner, Al Martin.
About Al:My current vocation is as a heavy haul trucker. As a husband and father of two teenagers, I have a busy life, but I also enjoy riding my motorcycle, writing, and studying science. Recently, I’ve taken on a role as an advocate and patient partner with DAC and Obesity Canada to help all people whose lives are touched by disease and medical issues. My aim is to support those in the industry, celebrate what’s great, fix what isn’t quite right, and build something new where needed.My passion is to champion the need for the ubiquitous inclusion of mental health in all healthcare. My wife and I both live with type 2 diabetes and obesity. We’ve also experienced the impact of these conditions with our fathers – we have “loved” experience in addition to our own lived experiences; mine passed in January 2023, and hers is still going strong in his 80s.
Al with Ian Patton from Obesity Canada at the Workshop
My float has a broken weld, which probably had a hidden crack for a couple of weeks. Today, it gave in to the daily toil of moving massive objects great distances. We found the issue, chained it up, and headed back to the shop for repairs. That’s how my day started on the first day of the conference. As much as I dislike bad analogies, sometimes we want to take a picture while holding a potato.
My body has been working hard for a long time and has needed a few trips to the shop for repair. Surgery two weeks before the conference was a bit of a surprise. The broken weld led to me finishing early, so off I rode to the conference, checking into a downtown Toronto hotel. My old hometown seems a bit surreal; no bellhops and concierge exist in heavy trucking, you’re a one-person crew. Solitude is the greatest thing—except when you need help.
I located our group. The room was full, and I knew only one of these people. They were mid-conversation. I wasn’t sure what was going on for about 35 seconds, but my brain churned as I heard the words of these great humans. It was obvious I was now immersed in the spirit of my people; patient advocacy was literally shooting out of them like firehoses. The talking stick couldn’t move quickly enough, and Linxi was bounding across the room to facilitate every single person’s interaction.
I was thinking fast and hard about the words I was hearing. I missed an important conversation and lesson from a couple of hours ago, but I knew the truths spoken were heartfelt because they overlapped with mine so many times. These are my people. They are passionate, tremendously engaged advocates who know the truth, hurt, and pain of being on the wrong end of good intentions inadequately backed and the daily machinations of the disillusioned. But in this room is a quiet power—the millions of hours collectively spent toiling at the millstone of chronic disease, caregiving, care receiving, and unrelenting pressure.
Day one, the passion was seething, but the lid was about to come off. I had the great pleasure of meeting Matt, my partner in the Fellowship Programme, who will work with me on “something awesome.” I met and got to know a few people. After supper, we exited for the pub and the Oilers game. Stories were told!
Some friends from other advocacy groups and research partners were there. I was humbled by the number of people who have dedicated their time to helping us and the chance to share my stories.
Day Deux
I was overwhelmed in the first five minutes when I realized how many people were presenting on the myriad of work done, along with the huge number of patient partners working on this. I officially met my colleagues in the Fellowship, sharing pleasantries after only knowing “of each other’s existence” and then the old Zoom call where my hands, more adept at shifting gears and chaining machines, were trying desperately to see my fellow fellows on tiny 1cm² blocks on my phone, nearly always hitting the wrong button.
“How did I get chosen? What can I offer?” It was humbling and difficult to hear that my life experiences were worth considering over anyone else’s. Perhaps my greatest fear is that I won’t have what it takes to rise to the level of my peers, many of whom have a solid background in academia. I’m an ACMZ driver but also a BMF, so I’m going to lay’er down best I can.
As usual, the presentations were inspired and hopeful, and the conversation outside the event was where the real work happened! There were a number of artful presentations in terms of visual arts.
I’d like to highlight every human I interacted with because I felt the love and respect from each and every one of them. A few standouts are Matt Langer, who will be my partner in the Fellowship project. Matt’s story involves a struggle with addiction, mental health, and homelessness. My own experiences intersect hard with his; addiction and mental health have affected my life since childhood, as my own father, also a diabetic patient, passed in January 2023 from undetected pancreatic cancer and other tumors. Matt worked on and was in the movie “Low.” The scene where a man suffers from a diabetic coma reminds me of when my wife and I checked on my father years ago when he let his sugars go unchecked and passed out. My wife, who lives with diabetes along with her own father, recognized the issue immediately while others assumed he was drunk. We got him to the hospital after getting him to drink some sugar-containing beverages. The fear and sadness of that experience flood back into me. I feel like I’ve been smacked by a bear trap binder right in the eye.
This movie, combined with the art and written exhibits outside, reminds me of the food “desert” I see in the trucking industry. Longer trips mean garbage food if I can’t get stopped near a grocery store. The resonance with foods available to the homeless is striking and needs thorough evaluation by society. Diabetics are not the only people in need of secure, reliable access to nutritive sustenance.
Another powerful experience was with Jasmine Maghera’s haunting images. Her painterly skill with composition, color, and texture brought me back to decades ago when I studied art in high school. One can’t help but be carried to the depths of a life punctuated by traumas and rebuilt strengths while locked with the images she’s painted and shared so beautifully with us. Anyone who’s lived or loved someone with trauma will be holding back tears in the presence of her work.
We were also treated to hear the stories of several Indigenous people who came to share and teach us about living with diabetes in communities that have been forgotten by many of us. My view of Indigenous people as a child was one of great respect for them, their lives in touch with the land, and their appreciation for our ancestors and our earth that sustains us. It breaks my heart to see and know how terrible their circumstances have been and how little care there has been for them. While I’ve lived my life somewhat distanced from their experiences, I feel great sorrow and grief over what they’ve endured. But I’m encouraged by their strength, courage, and determination to heal and spread love and kindness to all of us. The emphasis on building a relationship going forward while acknowledging and respecting the trauma of their past and present is truly important and impressive. It’s long past time to heal.
If those who have suffered mental illness, addiction, and lack of clean water and healthcare can heal and build a better system, I sure can too! It’s time to harness the spirit of these amazing humans. Their hearts and minds are powerful, and knowledge abounds. Respect for our earth and ourselves is evident in every word from the Indigenous people I met. Tamara, who ran to Winnipeg from the Cree Nation (look up proper spellings of names), is an inspiration for all of humanity.
I also want to shout out to Ryan, who lost his sight 12 years ago and has shown me things I have never been able to see with my working eyes. I only had a couple of short interactions with him, but his presence is very powerful because he’s showing us that obstacles can be navigated or blown away by simple advocacy and words to explain a better way to communicate.
As I packed up and grabbed my motorcycle from the garage, I arrived at the valet parking circle, found a place to pull my bike up, and got my bags. The bellhops had gone to get my old leather duffle and my two other ramshackle bags—what I carry in my tractor, what I strap to my bike. I thought of Katie, who checked out with me and talked to me several times. She’s a PhD candidate working in the field of her own chronic disease since the age of 3. An example of extreme professionalism, dressed in a pink blazer with a matching wheelie suitcase, she’s got the look my stylist fell flat on! But she’s got substance too—a kind soul, smart, and perhaps unaware of how much she embodies what we need to know. I think I chewed her ear off the last day with my rambling, but she showed me how to roll with it, be seen living life undeterred, and make a difference.
Back to my bike, strapping down bags, my boss called to discuss a difficult job for Monday morning. A 05:00 start—they wanted me to keep in touch and had already had one successful day on the project. I’m proud they trust me with this.
I’m also proud of my involvement with DAC and all the people I’ve mentioned above, and all the ones I didn’t. I wish I’d had time to share every conversation, like the ones I had with Kathleen, Heather, Jamie, and Ian.
Thankfully, though, my loquacious nature knows some bounds. When I’ve said everything I need to say, I simply go on for another hour…
I’ve got to say that was an awesome experience. I’m both exhausted and pumped, humbled and proud. Watch out, November is coming fast!
Diabetes Action Canada (DAC) is pleased to have Access Alliance as its latest Knowledge User partner. These partnerships foster more collaboration and support for ongoing patient-oriented research successes.
Access Alliance is a Community Health Centre, which has been serving Toronto’s marginalized, newcomer and immigrant communities for thirty-five years. They are focused on addressing the deepening disparities in society and leveraging the power of collaboration through systems change initiatives.
“Diabetes Action Canada is excited to partner with Access Alliance as part of our ongoing work to improve access to diabetic retinopathy screening. Reaching our most vulnerable populations is essential to saving sight and creating a healthier community,” says Tracy McQuire, DAC’s Executive Director. “We welcome the opportunity to engage with the communities served by Access Alliance to find solutions that make our healthcare system more accessible and equitable for those living with diabetes”.
This partnership is the second Knowledge User partnership for DAC, which has recently developed this option to increase collaborations beyond the research community. In order for projects to have real impact, they must reach the people who need them most.
“As a research-focused primary healthcare agency, Access Alliance generates evidence to inform program planning at the agency, builds the evidence-informed capacity of the community, and advocates community development through fullest community engagement to make a positive change at micro, mezzo, and system level. Our research and anecdotal service experience working with patients with diabetes and prediabetes will be expedited and enhanced meaningfully by our partnership and collaboration with Diabetes Action Canada. This will help DAC reach the deepest section of the community through our infrastructure and enrich our knowledge mobilization activities in a broader way to serve the community at large,” says Dr. Akm Alamgir, Director of Organizational Knowledge and Learning at Access Alliance MHCS.
In May, Diabetes Action Canada (DAC) awarded the first ever Catalyst for Change Awards to three Patient Partners.
The Catalyst for Change Award celebrates Patient Partners who have made outstanding contributions to advancing patient-oriented diabetes research and care, embodying transformative achievements in our community.
The 2024 winners are:
Kate Farnsworth – Mom of a daughter with T1D and supporting a family member with T2D, champion for DIY and other technologies to improve outcomes for people with T1D, and a longstanding member of the DAC Innovations in Type 1 program team.
Ryan Hooey – Person living with T1D and vision loss, advocate for increased accessibility and a member of DAC’s diabetic retinopathy screening program team.
Matt Larson – Person living with T2D, advocate for those experiencing diabetes and homelessness, and a long-time member of the Campbell Lab’s project aimed at improving outcomes for those experiencing homelessness while living with diabetes.
As with all DAC programs, Patient Partners were at the heart of developing this award and co-designing the nomination and selection processes.
“Our Patient Partners had requested this award for years,” says Patient Engagement Lead, Linxi Mitkolli. “We, as a team, did scoping and research on how other networks and organizations all over the world honour their patient partners. Then we brought the ideas to our Patient Partners to co-design how we would implement it.”
Patient Partners helped determine the nomination criteria, ensuring it was transparent and clear, and were part of the selection committee deciding. They participated in every step of the process, including suggesting and supporting a panel discussion by the winners at the DAC Workshop to give Patient Partners increased voice at the event.
Nominations were open to all members of the DAC community, including researchers, Patient Partners, and staff. Self-nominations were encouraged and appreciated.
At our recent Diabetes Action Canada Workshop, Dr. Jon McGavock introduced a video honouring the life of Patient Partner Clarence Nepinak, who passed away on November 2, 2022.
Nepinak was a respected Indigenous elder and community leader from the Pine Creek First Nation (Minegoziibe Anishinabe) in Manitoba. He was deeply committed to his community, and to improving health outcomes for all Indigenous Peoples. He and his wife, Barbara, helped found the Diabetes Action Canada Indigenous Peoples Circle and were tireless advocates for those living with diabetes.
He served on several advisory councils and boards, including the Indigenous Advisory Council at the Canadian Museum for Human Rights, the Elders Advisory Council at the University of Winnipeg, and the Indigenous Peoples’ Education Circle at Brandon University. He also worked with organizations such as the Healthy Aboriginal Network and participated in cultural events like the Winnipeg Folk Festival and the Festival du Voyageur.
Nepinak’s contributions to his community and beyond were widely recognized. He received multiple honors, including the Queen Elizabeth II Golden Jubilee Medal and the Queen Elizabeth II Diamond Jubilee Medal. In 2019, both Clarence and his wife Barbara were inducted into the Order of Manitoba for their dedication to advancing Indigenous culture (Home) (Manitoba Lieutenant Governor).
At the Diabetes Action Canada Workshop on May, the Network announced the awardees of the inaugural Research to Action Fellowship Award.
This unique fellowship runs from May to December 2024, and is designed for individuals with a personal connection to diabetes, offering an opportunity to turn their experiences into powerful advocacy and knowledge mobilization. The fellowship aims to give awardees the tools to make significant impact in the diabetes community.
The first cohort was chosen by the DAC selection committee from a pool of more than 60 applicants. Each one brings a unique set of strengths that will help them develop their initial projects.
Diabetes Action Canada is pleased to now be a member of Research Canada.
Research Canada is a national, broad-based alliance dedicated to advancing health research through collaborative advocacy. Their mission, which aligns well with DAC’s is, “to improve the health and prosperity of all Canadians by championing Canada’s global leadership in health research and innovation.”
Already, DAC has participated in one of Research Canada’s events, a Parliamentary Health Research Caucus on ‘Exploring the Future of Diabetes Treatment, Management and Prevention.’ There, DAC researchers Drs. David Campbell, Diana Sherifali and Lorraine Lipscombe spoke about advances in diabetes care. Patient Partner Tom Weisz was also a panelist at this event, sharing his own experience of living with type 2 diabetes and the importance of research to him.
The team at Diabetes Action Canada looks forward to continuing to build on this important collaboration.
On this latest episode of asPERusual – a podcast for practical patient engagement, host Anna Maria Chudyk interviewed our very own Tracy McQuire and Linxi Mytkolli to learn about the different ways in which our Strategy for Patient-Oriented Research network is committed to improving the lives of persons living with diabetes.
Regardless of whether diabetes is your research focus, this episode is of interest to anyone conducting interdisciplinary or knowledge-user-driven research. Tune in or read the interactive transcript to learn all about:
How Diabetes Action Canada | CIHR SPOR Network brings together diverse groups of knowledge users and guides them in finding a common language and space for them to work together to make better research, better policy, and better programs to better the lives of people living with diabetes;
Our innovative approach to evaluation (at the network and individual level);
The depth and breadth of involvement and engagement opportunities within the network, as well as their benefits; and
Key takeaways including the applicability of patient engagement across the spectrum of research and the need to democratize how we do patient engagement.
At the end of March, Michelle Murray retired from her role as Training and Mentoring Coordinator for Diabetes Action Canada. Michelle has been an integral part of the DAC team since the organization’s inception in 2016.
“Michelle has played a pivotal role in developing our Training and Mentoring program, ensuring all members were well-equipped to start their journey in patient-oriented research. Her support for early career investigators and her adaptability as we transitioned our research methods have been invaluable as we built this Network,” says Diabetes Action Canada’s Executive Director, Tracy McQuire.
Starting her career as an elementary teacher, Michelle later transitioned into research, taking on roles that allowed her to project manage and navigate the administrative side of projects. She enjoyed the challenge of coordinating all of the people and processes that need to come together for a successful outcome.
Michelle connected with Diabetes Action Canada through DAC researcher, Dr. Mathieu Bélanger, who is a professor at the Université de Sherbrooke. He suggested she take on the role as Training and Mentoring Coordinator at DAC.
The role is one that she has enjoyed immensely, as it allowed her the opportunity to learn and grow while mentoring the next generation of leaders in patient-oriented research. She loved the challenge of putting together a training program from scratch, alongside Bélanger and DAC’s Scientific co-lead, Dr. André Carpentier. The feedback they received was very gratifying, knowing that they had created a program that was actually helping trainees and improving their career paths.
Michelle was also very inspired by the opportunity to work with Patient Partners. “Getting to know them and work with them, and seeing how much work they do and how much focus and drive they have is incredible,” she says. “I’m really proud of the relationships I was able to build with the Patient Partners.”
She has also enjoyed the diverse range of work projects she’s been part of at DAC. For the last two years, she has worked with Dr. André Tchernof on the MyRoad training platform. She has also supported the Knowledge Mobilization team through moderating focus groups – something she had never done before and thoroughly enjoyed. “I really got out of my comfort zone for a lot of things,” she shares. “It was a really good experience with lots of insights—you’re learning constantly.”
Now, Michelle is looking forward to even more challenges as she heads into retirement. She is planning to travel, help her daughter transition to post-secondary education, and volunteer with local organizations. She laughs that as a volunteer she does not want to coordinate, but to be the hands-on help, to stuff bags or move boxes—however she can be a helping hand.
For everyone at DAC, Michelle will be missed. However, her contributions to our programs will have a lasting impact.
Join us for a webinar on Thursday, April 18, 2024 from 1 – 2 p.m. EST.
Did you know that KM-IS theories, models and frameworks can be used to help guide how we share, use or apply research results in the real world to benefit patients, the public, and the healthcare system?
Did you know that without using these theories, models and frameworks, your KM-IS efforts could lead to failed implementation and impact as well as wasted resources?
There are over 150 existing theories, models and frameworks to guide KM-IS practice, but how do we select the one that fits our purpose, and how do we actually use them?
Join us on April 18th for a live webinar where we will explore these questions, provide practical tools, guidance and more. You’ll also have the opportunity to ask questions, so bring them with you!
This webinar will be presented by Dr. Monika Kastner, the Co-Lead of the Knowledge Mobilization-Implementation Science and Evaluation Program of the Diabetes Action Canada (DAC) Network.
Dr. Kastner is the Research Chair in Knowledge Translation (KT) and Implementation at North York General Hospital, an Affiliate Scientist with the KT Program at the Li Ka Shing Knowledge Institute of St. Michael’s Hospital, and Associate Professor in the Institute of Health Policy, Management and Evaluation (IHPME) as well as through the Department of Family and Community Medicine (DFCM) at the University of Toronto. Monika’s research interests and goals are to make a positive impact on the health of vulnerable older adults with the use of innovative eHealth technologies and to advance the science and practice of KT and health services research.
