Author: Krista Lamb

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.

This month, we celebrate the retirement of Patient Partner, André Gaudreau.

Since the early days of Diabetes Action Canada, André has been a dedicated member of our team. He was a co-facilitator for the Training and Mentoring Program, a member of our Francophone Patient Circle, a member of several research teams, and a huge part of the development of the MyRoad Program. His leadership in many areas of patient partnership has been an incredible asset to our work.

In May, DAC thanked him for his service at our Workshop, where we received a standing ovation. In July, the Centre de recherche du CHUS at the University of Sherbrooke hosted a reception in André’s honour. Friends, family and colleagues joined in person and virtually to celebrate his achievements and thank him for his hard work and dedication.

Below, some tributes to André from those who have worked with him.

“Over the past decade, André has been very engaged at my research centre, the Centre de recherche du CHUS, as part of its patient partners committee, and then as one of the patients partners involved in the training and mentoring committee of DAC. He later was part of the patient partners who were engaged in the creation of My ROaD. During all those years, André has been highly active in a large number of individual projects across Canada and a very active member of our organizations’ governance in patient engagement. His energetic, generous and unassuming contributions have been an inspiration for the other patient partners, investigators, staff and students in all of those organizations. He particularly contributed in promoting research in French and focusing on type 2 diabetes. His friendly stance and exceptional level of commitment during all of his interactions have made him an unforgettable collaborator whom we’ll miss sadly. For me, André will forever embody excellence in patient partnership.” Dr. André Carpentier, Co-Scientific Lead, Diabetes Action Canada

André has been with DAC from the very beginning, playing a crucial role in developing our Patient Engagement and Training Programs. He was always the first to volunteer and, as our Network evolved, emerged as a leader among our Patient Partners in research, governance, and patient engagement. André was particularly passionate about the Francophone Patient Circle and was a tireless advocate for promoting research from Quebec and in French. We are incredibly fortunate to have worked with André and wish him all the best in his retirement. Tracy McQuire, Executive Director, Diabetes Action Canada

“Andre was not only a valued member of our research team back in 2021, where he provided much-needed insight into the experience of living with diabetes, he has also made significant contributions to all of DAC’s continuing work, being sure to bring the Francophone voice to the fore. Whenever I see him, it feels like finding a friend in the crowd.” Dr. Robin Mason, Women’s College Hospital Research Institute

“When beginning the reflections on what would eventually become the health research training and mentoring platform on obesity, diabetes and cardiometabolism that is now MyRoad, André Gaudreau was there in the early meetings and provided positive energy in his role as patient partner. In the early phases of the platform creation, through a joyful and assertive presence, he provided critical insight and often reminded committee members about the importance of patient engagement in all planned activities of the platform. Through extensive experience related to patient engagement in research, he provided guidance for other participants, helping them truly understand the essence and benefits of patient partnership. André was able to express favorable opinions or voice concerns as needed, and hence contributed greatly to shape the platform governance and activities. He is a pioneer regarding patient engagement in research and a source of inspiration not only for patients or citizens willing to engage in academic activities, but also for scientists and scientific organizations.” Dr. André Tchernoff, MyRoad Director and Principal Investigator

“Andre you are truly amazing. Your dedication to research and ensuring that the patient perspective is heard is unparalleled.  Thank you for your vision, leadership, and willingness to contribute,  since the very beginning.” Dr. Paula Rochon, Director, Women’s Age Lab

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.

By Sasha Delorme

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+++!!!

Written by Al Martin

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.

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.

Learn more about Diabetes Action Canada’s Diabetic Retinopathy Screening program.

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.

Congratulations Kate, Ryan and Matt!

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)​.

Read the CBC story about Clarence Nepinak’s life and legacy.

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.

Visit the podcast’s website, or download wherever you access your other podcasts.

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.

Read Michelle’s Kudos board.

Story by Krista Lamb

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!

Meet Our Speaker

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.

Looking back on 2023, our Diabetes Action Canada Network has much to be proud of!

We successfully launched many projects and programs. We grew the number of Patient Partners and researchers in our Network, and we worked with community partners, government, and others to bring the findings of our research teams to people living with diabetes.

In the report, you’ll find an overview of some areas of our work in the previous fiscal year that we’re particularly excited to share. We hope you’ll see the many ways that people with lived experience of diabetes have become essential parts of the research process.

It’s exciting to look back on what we achieved, but even better to know we’ve laid the groundwork for an impact-driven 2024.

Partnership within our communities is essential to creating positive outcomes for everyone living with or affected by diabetes. That’s why Diabetes Action Canada (DAC) is pleased to announce South Riverdale Community Health Centre (SRCHC) as our first official Knowledge User partner. The relationship, focused around DAC’s Diabetic Retinopathy Screening program, brings together a wealth of expertise and experience to reduce the risk of vision loss or blindness for those at risk.

The DAC network is focused on fostering meaningful connections between patients, their caregivers, and researchers, enabling them to collaboratively develop research questions, plan implementation strategies, and inform knowledge mobilization efforts. The ultimate goal is to ensure research outcomes have a tangible impact on transforming healthcare practice and policy. To achieve this, DAC collaborates with a wide array of partners, including academic hospitals, Patient Partners, government entities, and community healthcare settings, such as SRCHC.

“As a Knowledge User, SRCHC is an integral part of DAC’s collaborative network, actively contributing to the advancement of patient-oriented research and the development of innovative approaches to diabetes in community settings,” says Tracy McQuire, Executive Director for Diabetes Action Canada. “This partnership gives SRCHC access to resources and expertise within the DAC network of researchers and organizations dedicated to improving diabetes management and care. We hope that through this collaboration we will see wonderful advances in how people with diabetes are supported and how care is delivered in community health settings.”

“For more than ten years, SRCHC has partnered with UHN to provide diabetes eye screening to low-income and marginalized individuals living with diabetes, enabling them to develop considerable expertise in operationalizing diabetes eye screening in community-based settings. The Diabetes Eye Screening Program (DESP), operated by SRCHC, is the top-performing tele-ophthalmology program in the province based on current fiscal numbers screened and total numbers screened since the programs started. SRCHC’s DESP has screened approximately 4,000 individuals since its inception,” says M. Ann Phillips, Director of Community Health & Chronic Disease at SRCHC.

 “We are excited to continue to partner with Diabetes Action Canada and Ontario Health to spread and scale the programs across the province and inform policies related to provincial-level diabetes eye screening and limb preservation work. We believe that by working together we will be able to enhance the health system and Ontario Health’s understanding of diabetes eye screening as an ideal case for population-level health management,” says Shannon Wiens, VP of Systems and Strategy at SRCHC.

Learn more about Diabetes Action Canada’s Diabetic Retinopathy Screening program.

In the latest issue of the Canadian Journal of Diabetes, Diabetes Action Canada’s Digital Health team published an editorial looking at the ways that technology can improve diabetes care.

The publication, The Intersection of Informatics and Diabetes: Harnessing Technology to Improve Care, is an important reminder that digital solutions are being adopted quickly and can be used effectively to support those living with diabetes.

Authored by DAC team members Dr. Alexander Singer, Dr. Braden O’Neill and Conrad Pow, the editorial noted that DAC’s National Diabetes Repository, “Facilitates interprovincial comparisons, which is a critical consideration in Canadian health research…Furthermore, all projects using the NDR are co-created with patient partners who make up 50% of the Research Governing Committee. Patients have a direct say in project approvals to ensure that any proposed research work is done in the best interest of those living with diabetes. The NDR was the first scalable, national diabetes data platform in Canada that enables community-based participatory research.”

Learn more and read the paper now.

In 2023, the Diabetes Action Canada Knowledge Mobilization (KM) Consultation Service launched. The program, led by Dr. Monika Kastner and Julie Makarski, is designed to help research teams successfully integrate KM tools into their projects.

Knowledge mobilization helps move research from idea to implementation, and is an incredibly meaningful part of the process.

That’s why the DAC team is thrilled to announce the first funded research project to come out of the consultation program. Dr. Osnat Melamed from INTREPID Lab at the Centre for Addiction and Mental Health in Toronto worked with the DAC KM team on her grant, Helping Women with Diabetes Quit Smoking: A Gender-Informed Approach to Brain Health, which was recently funded by the Canadian Institutes for Health Research Knowledge Synthesis and Mobilization Grants on Brain Health and Reduction of Risk for Age-related Cognitive Impairment 

Melamed is a family doctor whose practice focuses on addiction and smoking cessation. Her research works on ways to help smokers quit, as well as to adapt smoking cessation treatment to meet the needs of specific groups. “In Canada, around 12% of adults still smoke. And those who do tend to come from socioeconomic-disadvantaged populations. Individuals who smoke often face mental health challenges which interfere with quitting success,” she explains. “My research looks at how we can tailor smoking cessation programs to meet the needs of specific groups for whom quitting proves difficult.”

One such group her team is focused on is women. Programs to help people quit smoking often don’t differentiate between the barriers that women may face compared to men, or the unique reasons they may have started to smoke in the first place. Tailoring smoking cessation support for women may improve their odds of quitting.

Her team is also investigating how type 2 diabetes and mental health or addiction issues make quitting more challenging . “This grant looks at tailoring treatment for smoking cessation for women with diabetes. We did the calculation that in Canada there are probably more than 200,000 women with diabetes who also smoke,” she says. Knowing that smoking with diabetes increases overall risk for heart attacks, strokes, dementia and other complications, it seemed wise to work on a tailored approach to help women managing both. “Hopefully helping them quit smoking with a women-specific approach could also improve their diabetes control and prevent some of these adverse outcomes.”

The plan is to look at the research literature to find women-specific programs that are available for smoking. Then, the team will look for ways to tailor this further for women with diabetes through consultation with Patient Partners and a multidisciplinary research and clinical care team.

Knowledge mobilization will be critical to the success of this project, so Melamed was eager to work with the DAC KM team to ensure all elements were considered from the start. “Many of us researchers, we know some things about knowledge mobilization, but we are rarely experts. It’s a science in its own right. Having the opportunity to sit down with a person who has this knowledge and expertise and has supported previous grants to really explain the breadth of things you could do for knowledge mobilization was fantastic.”

For Melamed, this consultation helped her see where she should consult potential users ahead of starting her project to ensure what she was hypothesizing was something that was actually helpful to the expected end user. This, she explains ensures that you don’t work on something for a year only to have the people you want to support find the project confusing or unhelpful. “
“Integrated knowledge translation basically says that if you want to have greater uptake of your research output, you need to really get everyone to the drawing table right from the beginning and design your product or your solution in a way that’s tailored to the needs of this population.”

The consultation process, she says, gave her a lot of clarity about the ingredients she would need for her grant, and also for the end product to be successful. She loved that the process was not just a one-off conversation. Melamed had two meetings with the DAC KM team and then was able to go back and forth with emails throughout the process—allowing her to ask questions whenever she needed to clarify something for her grant application. “It improved my understanding as a researcher, and it helped my grant because I could show that we’re doing to do this great research, but it’s not done in isolation. It’s not siloed. It’s going to be done in collaboration with a lot of people.”

The DAC Knowledge Mobilization Consultation Program is available to all researchers and trainees in our Network. Learn more!

Story written by Krista Lamb.

On October 26, 2023, our Knowledge Mobilization team partnered with the McMaster Collaborative for Health and Aging to present a workshop aimed at educating and supporting those wishing to use the principles of patient-oriented research in their work with older adults.

The event, Canadian Association of Gerontology 2023: Community Engaged Teaching, Research & Practice Pre-Conference Workshop, focused on “Building capacity for involving older adults, caregivers and partners in research.” The workshop, held in Toronto, outlined ways to go from theory to practice when working with Patient Partners. Older adults were included in all elements of the event, including as co-presenters.

“The general consensus is that engaging lived experience is important, and this workshop provided the practical how to’s for that,” said Julie Makarski, Diabetes Action Canada’s (DAC’s) Knowledge Mobilization and Implementation Science Research Manager.

Participants at the event received not only helpful information, but also resources for tangible ways to include patient partners. “There were varied levels of experience with partner engagement across participants, so folks were able to co-share and learn from each other,” says Makarski.

Many of the older adults who participated were very engaged by the event, says Soo Chan Carusone, Managing Director for the McMaster Collaborative for Health and Aging. “People were really inspired by learning from the diverse range of folks who participated. There was diversity in lived healthcare experience and in education levels, in terms of research involvement.”

In looking at the evaluations, Isabella Herrington, Research Assistant for DAC’s Knowledge Mobilization program, was pleased to see that respondents were now more open to working with patient partners. “Assumptions around patient partner engagement had been challenged and it reformed what engagement could look like for them.”

As one participant wrote in the feedback survey in response to an “a ha moment” they had during the event: “Watch your preconceived notions and assumptions.” Another noted that their feelings about people with dementia being able to participate in research had been changed.

For the five older adult participants and DAC Patient Partner Ron Beleno (a caregiver participant), there were other learnings. “I found out all aspects of the workshop are enjoyable and valuable. The organization, the presentations and the group discussions,” wrote one. Another noted the value in having very engaged older adults as part of the workshop, and in bringing together patient partners and researchers to co-learn together.

For more information on the McMaster Collaborative for Health and Aging, visit their website.

In October, members of the Diabetes Action Canada team spent several days in Montreal as part of the Vascular 2023 conference. This event brought together healthcare providers, researchers and Patient Partners from the diabetes and heart health communities for several days of education, information-sharing and networking.

“At Vascular 2023 we had excellent opportunities to connect with the community to discuss the great work of DAC, the importance of patient-oriented research and the impact of Patient Partnership on healthcare delivery,” said DAC’s Executive Director, Tracy McQuire said DAC’s Executive Director, Tracy McQuire.

DAC’s Lead of Patient Engagement and Knowledge Mobilization, Linxi Mytkolli, was not only there to support our Patient Partners, but also as a speaker sharing her own lived experience with type 1 diabetes. She was part of a panel discussing the Connect1d Canada and Type 1 BETTER programs—two resources focused on improving research outcomes for the type 1 diabetes community. “I had the honor of being on a panel discussing the integration of patient perspectives into type 1 diabetes clinical research. This experience reinforced that research is not just about data; it’s about people. Collaboration with individuals with lived experience is key to making our research more equitable and impactful,” she says.

Our researchers were well-represented throughout the conference, including presentations from Drs. Bruce Perkins, David Campbell, and Sonia Butalia. Dr. Campbell also screened his team’s short film, Low, which highlights the experience of living with diabetes while homeless. The film was developed alongside a team of people with lived experience who were involved every step of the way—from conception to production.

Patient Partner, Al Martin, participated in a foundational science presentation. He shared his personal journey as a way to put a human face on the work being done in the lab. “Witnessing Al’s compelling story about living with diabetes and obesity left a profound impression on me,” said Mytkolli. “His dedication to improving the healthcare system for future generations is a testament to the power of lived experience in advocacy.”

DAC’s Communications Lead, Krista Lamb, was active throughout the conference. She shared photos and updates from all DAC-related events on our social media channels and attended many meetings and sessions to advise on effective and empathetic science communications. This was her first in-person, out-of-town conference since the pandemic and it was a reminder of the need to support different learning styles and access levels. “ I met new people, was inspired by conversations, and was able to have meaningful interactions with so many. That said, I believe there are many wonderful reasons to continue to have hybrid meetings (or fully online learning sessions) to support EDI and ensure access to education to more people. We have a lot of options now that grew out of pandemic pivots, which I think will continue to improve the way we offer education in healthcare.”

As Diabetes Action Canada’s focus on digital health solutions deepens, the organization is pleased to welcome our new lead for these projects: Dr. Alexander Singer.

Dr. Singer has always been curious. He was the kid who raised his hand in class-and in life-knowing that if he didn’t understand someone else probably didn’t either. In school, he realized this need to know how and why things worked was a good basis for a career in science.

Now a family doctor and the Director, Office of Research and Quality Improvement at the University of Manitoba, as well as the Director of the Manitoba Primary Care Research Network, Singer’s questions often revolve around how to improve healthcare for everyone.

At the start of his career, he had thought it was archaic that doctors were still using paper files and noted how the ability to collect data electronically could not only improve outcomes for the person across from him, but for the entire community and beyond. When Manitoba started looking into adopting electronic medical records (EMR), he was pleased to be asked to contribute to the process.

Singer then started working on research projects looking into how EMR data could be used appropriately and effectively. His work has helped researchers in the province use de-identified EMR data to understand prescribing patterns, billing trends, and overall health outcomes. These findings allow the healthcare system to better understand what conditions people are managing and how to better optimize the care process for everyone.

This improved understanding of the health landscape has inspired Singer’s additional work in quality improvement in clinical care. “When we have the data, we can sometimes see where there’s a gap and care is not being applied equitably or where folks over here are getting optimal care and folks over here are missing some things,” he says. His work looks at ways to close those gaps.

When Dr. Michelle Greiver recently stepped down from her role leading Diabetes Action Canada’s National Diabetes Repository and digital health projects, she recommended Singer as a potential replacement. Greiver had been a collaborator of Singer’s and they had worked together on many projects in primary care research. He also liked that the role allowed him to bring a quality improvement lens to diabetes care.

“Diabetes in particular is a really useful exemplar condition because it touches so many different systems. It’s chronic, and it represents a spectrum of disease,” he says. “The way that you might try to improve primary care delivery for some other condition looks very similar to how you might try to improve the care for diabetes. So if we can get it right for diabetes I think there’s a reasonable hope that we can improve care for other conditions in primary care.”

This broad spectrum of ways people with the condition engage with the healthcare system offers ample opportunities to use EMR data to make the experience a better one. Singer is excited to learn more about the ways DAC researchers are using data, and to spend time with the Patient Partners who are foundational to each project.  

Written by Krista Lamb

In September, a team of researchers led by Dr. Alison Paprica from the Institute for Health Policy, Management and Evaluation at the Dalla Lana School of Public Health in Toronto, and Diabetes Action Canada’s Conrad Pow and Dr Michelle Greiver, published a new paper in the International Journal of Population Data Science. The publication, Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations, included information gleaned from studying Diabetes Action Canada’s National Diabetes Repository, along with 22 other data-focused initiatives. The researchers worked together to identify a list of 15 plain-language requirements that they believe all organizations who work with data about people should address. The 15 requirements have since been incorporated into a Canadian national standard CAN/CGSI 100-7: Operating model for responsible data stewardship.
 
Overall, the team found that the 23 organizations involved in the project had a lot in common when it comes to responsible data stewardship, something Paprica felt was very positive news. “We know that we can use data to increase our understanding of chronic conditions like diabetes, and to use what we learn to improve self-management and treatment, and potentially even prevention. Other studies have shown that members of the public want health data to be used for research, but they also have concerns about privacy and data being used for purposes they don’t agree with. Our paper presents concrete examples of responsible data stewardship practices and guidance on how data-holding organization can communicate their trustworthiness without providing an overwhelming amount of technical detail.”
 
For many, the use of data to help find solutions for health concerns is an exciting prospect. Knowing that data is being handled and shared appropriately can help ease minds as policymakers consider how available this information should be. “There is a tremendous opportunity to improve health and health care with data,” says Paprica, noting that unlike breakthrough health discoveries based on clinical trials, studies that only use data can yield large-scale improvements without exposing people to experimental treatments
 
“If we can show we are responsible stewards of that data, I think we will have public support to use it for more purposes. The knowledge that can be learned from data that are routinely collected is there for us to find. It’s just really important that we’re responsible data stewards, and that we earn people’s trust in terms of how we govern, manage, and use the data. Addressing the essential requirements that our research team identified is a way to demonstrate trustworthiness,” she says.
 
Moving forward, the team would like to expand the project to examine the processes of more organizations, including for-profit companies. Over the next few months, Paprica and her team will be reaching out to companies in the private sector who have data repositories. They are hopeful that, through these conversations, they can identify practices that will increase transparency and trust when companies use the data they collect. It’s more than just communicating what is legally required; it’s about having data-holding organizations proactively publish information in a format that helps people understand what’s happening with their data.
 
Learn more about the Diabetes Action Canada National Diabetes Repository!

Dr. Michelle Greiver recently completed her five-year term as Cheesbrough Chair in Family Medicine Research at North York General Hospital, where she led the University of Toronto Practice based Research Network, UTOPIAN. As she wrapped up that role, Greiver has also stepped down from leading Diabetes Action Canada’s National Diabetes Repository.

While she will continue in her role as a family physician and begin a new position as Research Program Advisor with the University of Toronto, Greiver remains, as ever, incredibly passionate about the importance of data-based research to improve health outcomes for all Canadians.

“I’m most proud of the ability to see beyond today’s difficulties to a better world. And that’s through things like big data used safely and securely in the public benefit; we must be careful about managing corporate interests in data. Data must benefit people through research, and through innovation,” she says. “Data can  really make a difference and improve care for people living with diabetes, both immediately and for the future”.

Greiver has also led important initiatives for responsible health data use.  This included her work with DAC, where she championed Patient Partners having a role in data governance and stewardship.  Patients were key in deciding  which research projects were granted access to data in the National Diabetes Repository for research. She is hopeful that, moving forward, good governance of data will make it easier for it to be used to support the greater good.

“I would like the next generation to have much better access to data. We need to strengthen and reorganize our data access systems; these can require   redundant applications to multiple research ethics boards.  Goals include having more researchers ethically use it, and ensuring that patients have a better idea of what’s done with their data–nothing about me without me,” she says. “I would strengthen patient involvement in big data projects so patients have a role in guiding what’s done with the data, and also monitoring how these data are accessed, used, managed, shared, etc. The strongest barriers should be for commercial uses, where there is no patient involvement and where this is done for profit. Currently, there are sometimes less restrictions for these types of uses and more restrictions for uses in the public benefit. This needs to be rebalanced.”

Finding that balance is something Greiver will continue to advocate for in any future roles. She believes strongly that locking away data does not advance health. “There’s a need to protect the public by conducting good research in ways that protect privacy, and by conducting good studies and using the data that we have.”

Greiver will be missed by the entire team at Diabetes Action Canada, who have learned much from her expertise and benefitted greatly from her leadership on the National Diabetes Repository.

“Michelle has always understood and advocated for the use of primary care data in research.  She has helped build our National Diabetes Repository to help answer important questions and concerns articulate by our Patient Partners to better understand diabetes complications management and treatment,” says Diabetes Action Canada’s Executive Director, Tracy McQuire.   “DAC now has an extremely valuable resource available to all our members that is patient-led and fills an important gap in understanding our diabetes impacts individuals in many different ways.”

Written by Krista Lamb

Have you ever wondered how diabetes researchers decide what to explore and investigate? Or what it’s like to participate in a study? Have you ever had an idea you cared about and wished someone could research? There are many different types of studies with very different commitment levels.

Join us for a webinar that will explain how your lived expertise of diabetes can inform research. Find out how you might be able to participate in studies tailored to your interests or even co-design or co-lead studies.

Patient-oriented research is a practice that aims to centre those with lived and living experience in all the research processes, from deciding what question to explore, to collecting the data, writing the report, and sharing the findings. Learn from researchers, and people living with diabetes about how they are co-leading important patient-oriented research projects and how you can get involved too.

Meet Our Speakers

Dr. Bruce Perkins – Professor, University of Toronto Department of Medicine

Bruce Perkins’ research platform, research leadership, clinical practice, and advocacy work has focused entirely on strategies to improve the lives of those, like himself, living with type 1 diabetes. His research has focused on early biomarkers and mechanisms of diabetes complications, and complications prevention through artificial pancreas technologies and add-on-to-insulin drug therapies. Among leadership in other projects funded by CIHR, NIH, and JDRF, he sits on the Executive of the historic but ongoing “DCCT/EDIC” Study (Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications), and co-leads the Innovations in Type 1 Diabetes Goal Group within the Diabetes Action Canada national patient-oriented research strategy.

Dr. Carly Whitmore – Assistant Professor, McMaster University

Carly Whitmore is a Registered Nurse and Assistant Professor in the School of Nursing at McMaster University. Through an applied program of research, Carly is leading projects that aim to optimize and integrate care for those living with co-occurring chronic conditions and mental health challenges. With experience as a psychiatric and mental health nurse, Carly draws upon stories and experiences to guide her co-designed research.

Linxi Mytkolli – Lead of Patient Engagement and Knowledge Mobilization

Linxi Mytkolli started with Diabetes Action Canada as a Patient Partner for over a year, she is now excited to join the team in her new capacity as the Lead of Patient Engagement and Knowledge Mobilization. Prior to joining DAC, she was a Senior Program Manager supporting a national suicide prevention and life promotion program with the Mental Health Commission of Canada. In this work, she focused on centering the wisdom of those with lived and living experience, while also translating findings from academic partners into tangible tools for the participating communities. In addition to her leadership in the mental health space, Linxi has more than six years of experience leading national programs in urban research, youth wellbeing, and sustainability in healthcare. Linxi holds a Bachelor of Science in Biopharmaceutical Sciences (uOttawa) and a Master of Science in Sustainability Management from the University of Toronto

Krista Lamb – Author and Science Communicator

Krista Lamb is a science communicator who specializes in helping translate complex topics into interesting and understandable stories for diverse audiences. Her first book, Beyond Banting, was released in 2021 and went on to win the Science Writers and Communicators of Canada Book Award in the general public category. In addition, Krista is the producer and host of multiple podcasts, including the award-winning Diabetes Canada Podcast.. Throughout her career, she has written extensively about health and research topics and she currently provides communications support for a number of organizations.

This article, by Krista Lamb, was originally released as part of the 100 Lives of Insulin project by the Insulin to Innovation Consortium. Visit their site to read more inspiring profiles of people who have been affected directly and indirectly by the discovery of insulin, and to learn about upcoming events. This article is reprinted with permission.

For Dr. Diana Sherifali, her mother’s diagnosis with type 2 diabetes is forever tied to the 1984 Olympics. That year was a big one in her house, as the event was hosted in Sarajevo. Her family is from the former Yugoslavia and seeing the event held in their homeland was a source of great pride for the family. “What took away from some of the pride and joy was my mom’s health issues,” recalls Sherifali.

Even as a young girl, Sherifali took helping her mother manage her health issues seriously. She attended medical appointments to translate, and learned how to prepare foods that would help her mother stay healthy. This lived experience of being a caregiver to someone with diabetes inspired an interest in nursing, and eventually led her down the path of diabetes research.    

“I always saw myself going into occupational nursing. If you asked me whether I was going to be a researcher, I would say no,” says Sherifali. However, her personal connection to the disease and her desire to better understand it nudged her in that direction.

After landing what she calls a “dream job” in a diabetes clinic, Sherifali encountered a complex case. Discussing it with the endocrinologist on staff, she realized there were many questions he couldn’t answer—there wasn’t research in that area. The doctor suggested she could go find the answers. “I thought, what does he mean by find the answers? But, really, what he was doing was planting the seed to say, “Well, if you can’t find the answer, do the study,” she says.

Sherifali sat with the idea for several days. Diabetes Nurse educators who do research are rare, and there were few role models for her. In the U.S. it was more common for diabetes nurses to pursue PhD and postdoctoral work, but it was relatively rare in Canada. Still, she was intrigued by the idea. She decided to pursue a Master’s degree at McMaster University in Hamilton with an eye to doing advanced clinical nursing if research didn’t work out. Once she got into school her desire to ask questions and her program’s emphasis on problem-based learning clarified that her heart really was in research. “I love the curiosity piece, I think that’s what pushed me into graduate work. Research is being able to be curious. In my role, I can constantly ask questions.”

As luck would have it, she was also working and studying just down the hall from one of the world’s leading experts in clinical research, Dr. Hertzel Gerstein. After completing her Master’s and PhD work, she sent Gerstein an email, asking if he would consider her as a postdoctoral student. Sherifali was the first nurse to ever hold a post-doc role in his lab. “Collectively, we came up with a program of research that really spoke to my knowledge, my skills, my experience,” she says, noting that the program focused on self-management in diabetes. 

The partnership has continued long past Sherifali’s postdoctoral position. She and Gerstein continue to work together and Sherifali has made a name for herself as one of Canada’s most recognized diabetes nurse researchers. She has focused much of her work on self-management, including updating the Clinical Practice Guidelines to better support self-management at the patient, clinical and population levels. 

She has also done important research looking at diabetes and health coaching – in particular supporting people with diabetes to self-manage in the community. Building on her research done over the past decade, her diabetes health coaching trial found improvements in blood sugar control, as well as in quality of life. “Coaching can improve peoples’ lives and their diabetes control by offering regular support and timely insights,” she explains.  

Sherifali’s work is also drawing attention to the unique challenges of an aging population living with diabetes and frailty. While many care providers are adept at managing type 2 diabetes, the unique challenges of type 1 diabetes are often unknown to them. Once a person with type 1 diabetes can no longer self-manage, they may move to a residence where no one has the skill or knowledge to support them. “In retirement homes or long term care, this may get overlooked and people say, ‘Well, they’re on intensive insulin therapy, take them off and put them on oral medications.’ That’s a lethal combination for someone with type 1 diabetes,” says Sherifali. Her research has also supported guidelines for nutrition and physical activity in frail older adults.  

While her research area spans all types of diabetes, Sherifali’s goal of helping and supporting others is just as clear as it was when she was a little girl translating for her mother at the doctor’s office. She hopes her work will make life better for those living with diabetes and that, as a research nurse, she will inspire others in the profession. 

— Written by Krista Lamb

This past year, Dr. Paula Rochon and Rachel Savage, Ph.D. from the Women’s Age Lab at Women’s College Hospital received funding for their Healthy Cities Grant. The proposal, supported by Diabetes Action Canada, received six years of funding from the Canadian Institute of Health Research (CIHR) and the Public Health Agency of Canada (PHAC). The research team will study Naturally Occurring Retirement Communities (NORCs). NORCs are a building or community where a high proportion of older adults reside but which was not originally designed to support their needs.

This research study will work to find solutions to improve aging in place opportunities and to ensure that older adults have a voice and choice over the support they receive as they age. Older adults overwhelmingly want to age in their own homes, but many are unable to do this when their safety and independence is compromised by loneliness, social isolation, declining health and reduced income.

“By being around other older adults and creating a shared sense of community, NORCs help alleviate concerns like loneliness or a lack of social engagement,” says Dr. Rochon.

The project puts an emphasis on building social connections, developing opportunities for physical activity within neighbourhoods and providing healthy food environments, all of which are important to improving the health and longevity of older adults living with diabetes, and to supporting the prevention of type 2 diabetes in those at risk.

Three support service models will be implemented and studied in ten NORC buildings in Toronto and Barrie, Ontario. The team’s preliminary data already shows that a considerable proportion of NORCs are in low-income and racialized neighbourhoods, which will be an important consideration. The team will also factor sex and gender, as well as age, ethnicity and socioeconomic status into the potential implementation of any NORC solutions.

Women’s Age Lab, is working with partners including the NORC Innovation Centre, the City of Toronto, and the City of Barrie. By developing practical tools, the research team and its partners on will fill important knowledge gaps to support the spread and scale of supportive services in NORCs across the country and elsewhere.

Learn more about Women’s Age Lab’s work here.

In May, Dr. Rayzel Shulman and her team published the KiT Protocol in BMJ Open. This protocol is another step towards successfully moving forward the Keeping in Touch (KiT) program, which aims to support youth as they transition to adult type 1 diabetes care.

The transition from pediatric to adult care is one of the most fraught in the type 1 diabetes journey. As children, those with type 1 often have their health care supported and managed by their parents, and they have typically grown comfortable with their medical providers and team over many years.

At 18, when they must transition to adult care, they are often managing a host of other transitions—the start of post-secondary education, leaving home for the first time, managing first jobs or first romances. An enormous change to their healthcare team may result in a disconnect that leads to missed appointments, disinterest in diabetes management, and even a decision to simply stop receiving regular care.

All of this can lead to poor health outcomes, which is why researchers have been investigating ways to make these transitions easier for everyone. The idea to use digital solutions to improve the experience led to the development of KiT.

A multisite, randomised control trial, KiT is being run in four pediatric diabetes clinics in Ontario and two in Quebec. Co-PI, Dr. Meranda Nakhla, a pediatric endocrinologist at the Montreal Children’s Hospital, is leading the study in Quebec. KiT uses text-message-based communication to encourage education, follow up and care. Shulman, a pediatric endocrinologist at The Hospital for Sick Children (SickKids) in Toronto, notes that text messaging is an effective way to engage with adolescents and young adults. “This population is very invested in texting,” she explains, noting that it reduces many of the barriers to communication that come when leaving voice messages or asking someone to use an app.

Working with co-PI, Dr. Joseph Cafazzo, at the Centre for Digital Therapeutics at UHN, and Memotext, a platform for co-creation of digital patient engagement, Shulman and her team developed the program. Research participants are recruited within four months of their last pediatric visit. They are then randomized into a group with either no intervention or one where they are using KiT.

The group using KiT is provided with a personalized education program developed using online transition resources identified by co-PI, Dr. Anne-Sophie Brazeau. Participants receive regular text messages about topics related to transition to adult care based on data collected from the Readiness of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool. This enables the participants to receive support in identified areas they need most. KiT also gives an option for the participants to receive support in topics that are of interest to them.  Patient Partners, including lead partner Marley Greenberg, helped to ensure the messages were relevant, as well as written appropriately for the age group they were meant to serve. “The text messages have a youthful flavour,” Shulman notes, “There are lots of emojis, but they also contain links to trusted sources of information.”

Alongside  messages with useful tips, KiT helps coordinate ongoing diabetes care. Scheduled texts come in to check if the final pediatric visit has been booked, and if the new adult appointment is scheduled. It also provides reminders about upcoming scheduled follow-up visits. Shulman notes that this isn’t just an appointment reminder, but much more in-depth: asking participants if they have completed any required  labs before their visit, uploaded data from their pump and/or sensor, if they have registered for a patient portal (if one exists at their clinic), and provides other  specific information such as contact information for  the adult endocrinology clinic they will be attending. KiT can explain what to expect at the clinic, as well as allow you to jot down notes or questions that it can remind you about before  your scheduled appointment.

And if the participant has questions throughout the year? KiT is set up to recognize keywords, like hypoglycemia or alcohol, and send trusted information sources when the user texts a question that matches a keyword. This helps engage the young person and provide them with vetted resources to support their needs.

So far 57 young adults are participating in the study and the team is hoping to recruit a total of 210 within the next year. The team is also starting to study the implementation process. Co-PI, Dr. Laura Desveaux, an implementation scientist at Trillium Health Partners, will be assessing all data collected and interviewing participants to learn which components of KiT were used most and led to better outcomes and why.. This type of detailed assessment will help determine the next steps for the program as it develops and for understanding the final results of the KiT study.

Additionally, to determine the cost of adapting and implementing KiT, co-investigator Dr. Valeria Rac affiliated with University Health Network (UHN) and Diabetes Action Canada, is leading the cost of implementation analysis. This will help the team understand the costs associated with implementing and scaling KiT in a real-world clinical setting.

“The project as a whole is looking at self-efficacy as the main outcome and diabetes-related stigma and readiness to transition, and measures of glycemia as secondary outcomes,” says Shulman. “We hope that in the end this tool can help manage some of the gaps currently found in the process between pediatric and adult care, and support better long-term outcomes for young adults living with type 1 diabetes.”

Written by Krista Lamb

Recently, Dr. Calvin Ke, a clinician-scientist from the University of Toronto’s Department of Medicine and a Diabetes Action Canada Researcher, has been focusing his work on improving diabetes care in Ontario overall, and in particular for those who are diagnosed with type 2 diabetes (T2D) before the age of 40.

This particular group, who have young-onset T2D, are at a greater risk of developing complications, requiring additional services and needing longer and more frequent hospitalizations. Ke and his team are looking at how to improve the care pathway for these people with diabetes to ensure they are living healthier lives.

To do this, the team is looking to Hong Kong and a project that is already showing success. In Ke’s recent publication, Team-Based Diabetes Care in Ontario and Hong Kong: A Comparative Review (published in Current Diabetes Reports), he was able to look at how the province could take some of the ideas already being used in Hong Kong to improve care in Canada. Looking deeply at both systems, he saw a great deal of opportunity for meaningful change to happen.

“At Ontario’s Diabetes Education Centres, diabetes educators provide expert guidance to help people learn how to manage their diabetes. As more and more people are diagnosed with diabetes, we must ensure that these Centres are equipped to meet the changing needs of our diverse population. We can learn valuable lessons by comparing how diabetes care is provided in different countries,” he says. “Hong Kong’s innovative model was developed by Professor Juliana Chan at the Chinese University of Hong Kong. This model weaves diabetes education into a multicomponent program that greatly improved health outcomes while reducing costs. We have a tremendous opportunity to strengthen our Diabetes Education Centres by adapting these innovations to provide better and more personalized care, especially for those with young-onset type 2 diabetes.”

Currently, Ke is working on several projects aimed at incorporating these concepts into ways to improve practice. He was recently awarded a Catalyst Grant from the Novo Nordisk Network for Healthy Populations at the University of Toronto to work on personalized care pathways for those with young-onset T2D in Ontario’s Peel Region. In this project and the others he is involved in he sees a vital role for patient partnership.

“Patient Partners have an enormous role to play at every step of our research. Patient Partners share their lived experience to help researchers understand the current needs and gaps in diabetes care. In this manner, Patient Partners work collaboratively with researchers to ensure that interventions are adapted in an appropriate way that responds to the community’s needs and bridges existing gaps,” he says.

You can learn more about the work of Ke on his website and in this recent profile by the Banting & Best Diabetes Centre at the University of Toronto.  

Story written by Krista Lamb

While Patient Partnership in research is at the core of the Diabetes Action Canada mission, it was clear from the inception of the organization that having people with lived experience at all levels of our programming would be an essential element of our success. Now, as we move into DAC 2.0, that commitment to patient partnership in governance continues to grow.

“For some organizations, people with lived experience sit on committees and are part of research teams, but they are not at the head of those tables. For Diabetes Action Canada, we wanted to see lived experience represented throughout our teams, which includes the Steering Council that leads our direction, and our Research Governing Committee” says Tracy McQuire, Executive Director at Diabetes Action Canada.

The Diabetes Action Canada Steering Council is led by Dr. Cindy Bell, who is the mother to two daughters with type 1 diabetes. Dr. Bell is also a highly-regarded scientist who provides a seamless blend of those two worlds.

Patient Partner, Pascual Delgado, is also a member of the Steering Council, and in 2023 was named Chair of the Network’s Equity Diversity and Inclusion Committee. Originally from Cuba, Delgado, who lives with type 2 diabetes, is passionate about raising awareness about diabetes in immigrant communities where there may be barriers to accessing care. He feels it is essential to include Patient Partners in governance given their lived experience, and also knowing that many will have held these types of management roles in other areas of their careers. “They can contribute their novel or never-considered expertise in the DAC community,” he says. “Most importantly, if they come from other cultures or diverse backgrounds that experience can enrich our research, aims and projects.”

For Christina Mulchandani, the new Co-Chair of the Research Governing Committee, living with type 1 diabetes since 2016 has made her aware of the need for lived experience in organizations dedicated to diabetes. With more than 18 years of employment in human resources she also brings very direct career experience to the table. “My diagnosis transformed my direction in life,” she says. “Despite the necessity to proactively manage my diabetes, I am driven to be involved on a larger scale to help my community living with diabetes.”

This same drive fuels Patient Partner, Sylvie Dostie, who was diagnosed with type 1 diabetes when she was five years old. A member of the DAC Steering Council and recently elected chair of the Francophone and Immigrant Patient Circle, she sees the feedback loop between people with lived experience and researchers as critical. “We are the intermediaries between patients and researchers. This can make communication easier for everyone,” she says of the governance link.

Patient Partner, Dana Greenberg, agrees that this link is essential. As an experienced fundraising professional and a person living with type 1 diabetes, she is keen to bring her voice to developing policies that will support the aims of the organization. Having been a co-PI on several research programs and a long-standing Chair of the DAC Collective Patient Circle, she knows the many diverse roles Patient Partners can play and how governance can support them appropriately. “It is important to me to continue to help develop policies related to meaningful patient engagement, “ she says.

“We are lucky to have such an engaged group of Patient Partners interested in supporting our work, and we are looking forward to seeing where their direction leads us,” says McQuire.

Story written by Krista Lamb

For Seeta Ramdass patient engagement is critical to the success of any health care project. That’s one of the reasons she was excited to learn about Diabetes Action Canada, where she would have the opportunity to not only play an active role in research projects, but also to use her career experience to support the organization’s governance. Now, Vice Chair of the DAC Steering Council and a participant on multiple research and project teams, she is able to make a real impact on health outcomes for people living with diabetes.

Initially, however, she was skeptical. “Working in healthcare, I’ve advocated for patient engagement and patient partnerships in research for decades, but I still felt like patients were not being engaged very authentically in research. It was still very research-heavy, science-heavy and organizationally heavy, and the patient was really a token. I was curious if DAC was authentically integrating patient perspectives, not only from the point of view of managing the condition itself, but also from the socio-cultural context and the diversity of patients. Were diverse patient voices going to be engaged?” A colleague, who is also from a visible minority, shared his own experience with DAC and encouraged Ramdass to get involved.

“He said, “no, I think you’ll be happy with what you find.” And he was right. I found that wow, yes, there is a diversity within DAC teams in terms of leadership and research. But there was also a nice diversity in terms of the patients and the community members that have been recruited and involved. When I started going to meetings with researchers and hearing projects, yes, the patent’s voice and input was absolutely valued from the cultural context, and the interest and commitment to being socially inclusive was already in place. And I love that everyone I’ve met at DAC so far is really open to learning and they’re embracing going forward and trying to implement it. That authenticity matters.”

As a person living with type 2 diabetes, a condition with a higher prevalence in the South Asian community, Ramdass knows that token engagement does not lead to impact. She also knows that the research process is not always one that looks at diabetes through an equity lens. That knowledge drew her to take on a project with Dr. Joyce Dogba’s team, which invited her to go through the team’s research papers and provide her feedback on ways that the work could be done with a stronger EDI lens. “I came up with 15 recommendations and pointed out where there were opportunities to ensure that equity, diversity, inclusion, and accessibility, were considered in the methodology of the research, in the analysis of the research, and then in how the findings were reported,” says Ramdass. “And the team is using that input to do things. I can hear it in the way Dr. Dogba is phrasing questions, adjusting her language and her communication and terminology to the audience of patients that we’re dealing with – she is truly a model of an inclusive DAC researcher with her commitment to EDI in research! To me, that was great because we’re contributing to this work as patients and to know it is being implemented, often in real time, is valuable.”

This exchange of information is something that appeals to Ramdass. She believes that while it’s important to have voices at the table, everyone has to be engaged in a meaningful conversation for there to be real impact. She also likes that the team at DAC is respectful of the time a person has available, and the different things they may be dealing with. “Respecting people’s different religious holidays, respecting the pace at which people communicate, some people take a little longer to phrase their thoughts because we have different sociolinguistic ways of expressing ourselves, different literacy levels, different language  competencies, because not all of us are necessarily anglophones or francophones, we may be  allophones or speak Indigenous languages. I love that there is patience with allowing people to express themselves, or to not express themselves. If someone’s not comfortable addressing a topic, we understand and recognize that their silence is telling us something as well,” she says.

Moving forward, Ramdass has big goals for ways that she wants DAC to focus on. She would like to see a commitment to make research publication language more culturally sensitive, inclusive and respectful. She worries that the blaming language in some of the publications she has seen adds to further marginalization of groups. She would also like to see broader communication options for those who are not comfortable speaking in English or French, and more work done to support vulnerable populations. She is encouraged that DAC shares these commitments and looks forward to helping guide the process of implementing them more widely.

Article written by: Krista Lamb

Canadian and Dutch researchers are examining whether timed lifestyle changes can help restore the 24-hour rhythm of people at high risk of developing type 2 diabetes.

There are many Diabetes Action Canada members involved in this project, including our Scientific Co-Lead, Dr. André Carpentier.

Read the full story here.

Diabetes Action Canada is proud be a member of the World Health Organization’s Global Diabetes Compact. The Compact, which has a vision of, “responding to the increasing burden of diabetes around the world,” was launched in 2021 to coincide with the 100^th anniversary of the discovery of insulin.

Comprised of members from diabetes organizations around the globe, Diabetes Action Canada looks forward to learning from other members and supporting the Compact’s goals of “ensuring that all people who are diagnosed with diabetes have access to equitable, comprehensive, affordable and quality treatment and care.”

DAC’s Patient Engagement lead, Linxi Mytkolli will represent the Network at Compact meetings.

Learn more about the WHO Global Diabetes Compact.

We are pleased to announce that the Data Transfer Agreement requirement for researchers to use Connect1d Canada is no longer in place. Interested research teams now only need Research Ethics Board approval to use the service.

This provides much more flexibility and accessibility for the platform and we hope it will encourage many more research teams to list their studies on Connect1d Canada.

Interested in finding out how Connect1d Canada can help your share your study with a diverse pool of people living with type 1 diabetes? Watch our video!

Visit Connect1d Canada to learn more.

We are pleased to celebrate the career of Dr. Maureen Markle-Reid, a Diabetes Action Canada investigator and a trailblazer in designing, implementing, evaluating, and scaling-up integrated and patient-oriented interventions to improve care and outcomes for older adults with multimorbidity (> 2 chronic conditions) including diabetes. She retired in January 2023 as a Professor in the School of Nursing at McMaster University after completing 30 years of service. Markle-Reid’s work has had an indelible impact in the field and she has trained a new generation of nurse-scientists who are dedicated to continuing this critical work.

Markle-Reid was named the very first Canada Research Chair (CRC) in the School of Nursing in 2013 and completed a second 5-year term of her Chair in 2022.  She is one of only a handful of Nurses to hold a CRC. “It was truly and honor to hold a CRC, which provided me with a unique opportunity to focus primarily on my research and mentor the next generation of nurse scientists” she says. ‘After becoming a CRC, Dr. Jenny Ploeg and I were fortunate to secure funding from both CIHR and the Ontario Ministry of Health and Long-Term Care, and co-founded the Aging Community and Health Research Unit (ACHRU).”

The overall goal of her research has been to improve the quality of life of older adults with multimorbidity and to support their care partners . This work was something Markle-Reid had felt drawn to from early in her career. Before completing her PhD, she had spent 10 years in front-line nursing and managerial positions in both the hospital and the home and community care setting. This experience provided her with first-hand knowledge of the gaps in the healthcare system, laying foundation for her future research program. “I was really interested in how to fix some of these problems to enhance the quality of life, not only of the older adult patients, but also to improve the quality of work life for the nurses.”

Working with older adults was of particular interest to her, as she saw them often in her work but realized there weren’t a lot of people interested in gerontology in the same way she was. Working in hospitals, she thought about this fleetingly, but she says the lightbulb moment that would change her career happened after she transition from working in the hospital to working in home and community care. “I thought, wow, you can make such a difference to people’s lives. Seeing first-hand the care and support needs of older adults living with complex chronic conditions, and the role and value of nurses in meeting these needs was really eye-opening for me.”

She has led or co-led numerous pragmatic trials of nurse-led interventions for older adults and their care partners in real-world practice. These interventions co-designed with older adults, care partners, and policy makers to increase the relevance of the interventions, and enhance the likelihood that the interventions will be adopted into real-world practice. 

A key focus of Markle-Reid’s career has been to integrate the findings from her studies into practice and policy. She has worked collaboratively with over 150 organizations, and clinicians, policy makers, patients, and caregivers to produce research that directly responds to the information needs of these groups. Her work has had international and national impact and resulted in evidence-based solutions that address the challenges of multimorbidity. Having collaborated with more than 100 agencies, she and her team at ACHRU have formed solid partnerships and developed studies based on the needs and issues these agencies identified as areas of concern. “We were able to co-design, test, evaluate and then scale up a variety of interventions. The exciting part for me is that many of the interventions we’ve tested over the years have already been integrated into practice, and influenced policy,” she says. “Often, when we test these interventions, we are changing practice as we study it.”

As part of Diabetes Action Canada, Markle-Reid and her team led the older adults research program, and DAC co-funded a CIHR-funded program of research focused on examining the implementation and effectiveness of a community-based self-management program for older adults with diabetes and multimorbidity, and assessing its scalability. A pragmatic randomized controlled trial in 2 sites each in Ontario and Alberta established the feasibility and preliminary effectiveness of the program. The goal of this CIHR-funded research program was to evaluate the intervention in more diverse settings in Ontario, PEI, and Quebec. In Scarborough, a suburb of Toronto. Diabetes centres have already started incorporating elements of these interventions into their work.

With DAC, Markle-Reid was also able to continue to nurture her passion for patient-oriented research (POR) and patient engagement, something she was already doing before it even had a name. “The meaningful engagement of patients as research partners has totally enriched all our studies and the work we’ve done. The lived experience people bring to the table helps to shape the research and ensure it addresses the needs and concerns of patients and caregivers,” she says.

A key goal of her research program has been to develop and mentor the next generation of leaders in the area of POR in aging. The ACHRU team has trained more than 40 undergraduate, graduate, and postdoctoral fellows who have gone on to secure prestigious awards, funding, postdoctoral fellows and faculty positions. One of her postdoctoral fellows, Dr. Rebecca Ganann, is now the Scientific Director at ACHRU and co-leading the Diabetes Action Canada older adults with diabetes research program. Markle-Reid hopes that more high-caliber trainees will consider a career in gerontology and aging research.

Though she has at least a few more months of work to do as she transitions her research program to new leadership and finishes several studies, Markle-Reid is excited about the move towards fully retired life. She is looking forward to traveling and spending more time with her grandchildren. She may even follow in her parents’ footsteps and take up painting. While she will be missed in her role as a Nurse Scientist and co-lead in ACHRU and the McMaster Collaborative for Health and Aging, , she has left a legacy that will continue to benefit older adults for decades to come.

A recent article from the Canadian Institutes for Health Research (CIHR) shares highlights from the work of the Diabetes Action Canada Indigenous Patient Circle and the Indigenous Youth Mentorship Program (IYMP).

The article includes interviews with Dr. Jon McGavock and Patient Partner Sasha Delorme, who highlight the work they are doing to improve outcomes for Indigenous Canadians living with or at risk of developing type 2 diabetes.

Read the article now.

In March, Laura Syron, President & CEO of Diabetes Canada, published an op-ed in Healthy Debate looking at the need for increased research on diabetes in women.

As she writes, “Women deserve better, including more thoughtfully designed clinical and research studies, particularly when it comes to chronic conditions.”

Visit the Healthy Debate website now to read the full piece.

In January, the Canadian Institutes for Health Research (CIHR) announced funding for the Accelerating Clinical Trials (ACT) Canada Consortium, which will improve Canada’s ability to conduct clinical trials for therapies that could have a positive impact on health outcomes for Canadians.

ACT brings together hundreds of researchers over 28 networks, 11 clinical trial units, Patient Partners, members of the biotechnology industry, government, and other experts. Diabetes Action Canada will be involved through its participation in the Diabetes Clinical Trial Network, led by Dr. Hertzel Gerstein (Deputy Director of the Population Health Research Institute at McMaster University and Hamilton Health Sciences).

The ACT Consortium, explains Gerstein, will help move clinical trials forward faster and more effectively. “It was recognized that there is a tremendous amount of clinical trial expertise in this country. A lot of it is in different parts of Canada, and we may not be interacting with each other as much as would be optimal.” ACT will help facilitate interactions and collaborations and accelerate the process of moving trials forward.

The Diabetes Clinical Trial Network includes diabetes clinical trial researchers from across the country. One of its members is Dr. Gary Lewis, who represents not only his own work as a clinical trialist, but the work of Diabetes Action Canada. Lewis will help ensure the role of Patient Partnership for diabetes-related clinical trials that may be facilitated by this network. .

“Patient engagement is an important part of the whole ACT Consortium for all disease areas, and the patient expertise related to diabetes is already in Diabetes Action Canada,” says Gerstein. “If this consortium is successful, then at the end of the day there will be a robust network of clinical trial units and research networks that start to work together, and that are supporting and doing high impact clinical trials, both Canadian and international. The involvement of patient expertise through groups like Diabetes Action Canada will ensure there is patient input into both the design and the knowledge mobilization that comes after the trials are finished.”

The entire concept is one that Gerstein thinks will make a real difference in how Canadian organizations conduct and manage clinical trials, which will have positive outcomes on people living with diabetes and other health conditions. “The premise of this is to make a bigger impact with trials for both patients and providers. I think the exciting part is that it will hopefully develop into a robust, growing infrastructure that will facilitate clinical trials in all disease areas.”

All of us at Diabetes Action Canada were saddened to learn about the recent passing of Elder and Knowledge Keeper Clarence Nepinak. Clarence, alongside his wife Barbara, was a driving force within our Indigenous Patient Circle and an tireless advocate for his community. He will be deeply missed.

Read a tribute to Clarence by CBC News

Recently, Diabetes Action Canada’s Dr. Val Rac and Patient Partner Ryan Hooey appeared on a Diabetes Canada webinar presentation about diabetic retinopathy and sight loss.

The webinar, hosted by Brooks Roche, discusses the importance of annual screening and talks about the Diabetes Action Canada diabetic retinopathy screening program, which Dr. Rac is leading.

Watch the video now!

By Krista Lamb

In October 2022, Dr. Cindy Bell became the new Chair of the Diabetes Action Canada Steering Council.

Dr. Bell is an accomplished scientist and the parent of two now adult daughters with type 1 diabetes. She has been an advocate and ally for the diabetes community for more than thirty years.

Dr. Bell was the Canadian lead on the establishment of the first Medical Research Council of Canada – JDRF partnership in the mid-1990s. This partnership funded two cycles of projects in Canada, including work on the Edmonton Protocol. In addition, she and her husband have organized multiple golf tournaments in partnership with JDRF to raise research funds.

“’I’ve spent many years of my career working on getting research implemented and into the healthcare system in particular. I am thrilled to have this opportunity to continue doing that in another capacity,” she says.

As a scientist, Dr. Bell also brings a research lens to her role with Diabetes Action Canada. She retired from her role as Executive Vice President, Corporate Development with Genome Canada in 2021, after more than twenty years in leadership roles with the organization. There, she was responsible for establishing partnership and providing policy and strategic advice on scientific and other aspects of Genome Canada’s programs, including overseeing and managing the peer review process used to establish research programs.

Her interest in the work of Diabetes Action Canada stems from her own passion for trying to change health systems to better align with the needs of patients and caregivers. “It’s incredibly important. I don’t know how many times throughout my science career and personal life, and not just related to diabetes, that I personally was frustrated with an inability to really contribute to the patient care that I was receiving, or that a loved one was receiving. It’s not any fault of an individual physician or care team, but just more of the system,” she says. “In the dynamic between a doctor and patient, the patients seldom feel empowered. And yet, we know from great experience that you have to listen to patients, you have to take into consideration their experiences.”

In her role of Chair for the Steering Council she hopes to ensure the Diabetes Action Canada team has the support they need and the input they require to make strong decisions around strategy and programming. She also hopes to see the organization’s work result in better outcomes for those living with diabetes. “I’m very committed to bringing new innovations and new technology to the healthcare system. I think our Canadian healthcare system needs to be better at adopting new techniques, technologies, skill sets, whatever it is to accomplish what we need to do for the patient. That will always be in the back of my mind as I’m working with Diabetes Action Canada,” she says.

As we move into phase two of Diabetes Action Canada, the Network has a clear goal of translating the research and learnings from our first phase into understandable and implementable deliverables that aim to better support those living with diabetes in Canada. To further this, we are pleased to announce funding support from Diabetes Canada for our Mobilizing Knowledge and Implementing Equitable and Cost-Effective Health and Social Care Services for Persons Living with Diabetes in Canada project.

“In order for all of the work done over the past six years to really have an impact on the health of people living with diabetes, it must be shared effectively,” says Diabetes Action Canada Executive Director, Tracy McQuire. “Our Knowledge Mobilization team, led by Dr. Monika Kastner, has developed tools to optimize the sustainability and scalability of our research learnings. This crucial funding from Diabetes Canada will ensure outcomes are easily accessible to the community and adopted more readily into practice and policy.”

This funding will support Diabetes Action Canada in having a Knowledge Mobilization team member embedded with each research program. This means that throughout the project, there will be an emphasis on how these findings will be explained, shared and used by those who could benefit. This is a much more effective process, as too often Knowledge Mobilization is left to the end, when needed changes cannot be made and valuable opportunities for successful implementation are lost. This new process also allows the planning for how to spread and scale research findings to happen simultaneously with the research itself.

“Diabetes Canada is excited about our continued partnership and funding support for the ongoing work of Diabetes Action Canada,” says Laura Syron, President & CEO, Diabetes Canada. “The Knowledge Mobilization Program will help bridge the gap between science and practice through engagement with the diabetes community. This is essential to shaping research projects and innovations in care to help improve the quality of life for those living with diabetes.”

For the Diabetes Action Canada research community and in particular our Patient Partners, making sure the organization’s work moves beyond the lab is a critical step to improving the lives of people living with diabetes. This new Diabetes Canada funding will help ensure that happens.