Author: Krista Lamb

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,” 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 research projects.

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

That’s why the DAC team is thrilled to have the first funded research project to come out of the consultation program. Dr. Osnat Melamed from INTERPID 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. Alexander 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 care 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 providers and team over many years. At 18, when they must transition to adult care, they are often dealing with 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, so researchers and healthcare teams have been investigating ways to make these transitions easier for everyone. The overall goal of a smooth transition to adult care benefits everyone, and 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, who is also a DAC researcher, and Memotext, a platform for co-creation of digital patient engagement, Shulman and her team developed KiT. 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  by co-PI and Diabetes Action Canada (DAC) investigator Dr. Anne-Sophie Brazeau. They 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.”

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.

Diabetes Action Canada’s next phase is launching, with exciting new programs and plans that will take the learnings from the last six years and begin the process of implementing them to improve health outcomes.

This second stage is made possible thanks to a new round of funding from the Canadian Institutes for Health Research (CIHR) and matching funds from our partner organizations across the country. This continued support for Strategy for Patient-Oriented Research (SPOR) Networks like ours will allow us to continue to connect patients with lived experience with researchers, health professionals and health system decision-makers across Canada.

“Diabetes Action Canada 2.0. is an important next step for our organization,” says Executive Director, Tracy McQuire. “This funding will allow us to scale the findings we’ve made and work with our partners to create sustainable, long-term programs.”

In phase one, Diabetes Action Canada laid the groundwork for success. Projects funded and supported by the Network helped improve access to screening for diabetic eye disease and foot ulcers. These initiatives have the potential to reduce the complications of diabetes, including vision loss and amputation. The organization also developed the National Diabetes Repository, which provides researchers with access to health care data that can be mined for critical information about the needs of Canadians living with diabetes and ways to improve access and care. Other programs focused on increasing support for older adults with diabetes and reducing diabetes risk for Indigenous populations.

Phase two of Diabetes Action Canada’s strategic plan has an emphasis on knowledge translation and mobilization, as well as digital and data-driven solutions, community and population-based surveillance, mental health support and increased access to health care services for those from marginalized groups. In addition, Diabetes Action Canada will focus more resources on support for policy change, including work already underway to develop a National Diabetes Strategy for Canada.

“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,” says Dr. Gary Lewis, Co-Scientific Lead for Diabetes Action Canada. “We look forward to working with all of our Network members to bring real and actionable change to those in our diabetes community.”

Exciting new research from the Drs. Bruce Perkins and Ahmad Haidar labs has been published in Nature Medicine. This project looks at how a combination therapy could have the potential to improve blood sugar control and the performance of an artificial pancreas.

The paper, “Empagliflozin add-on therapy to closed-loop insulin delivery in type 1 diabetes: a 2 × 2 factorial randomized crossover trial” can be accessed on the Nature Medicine Website.

JDRF and Diabetes Action Canada both provided funding support for this project.

By Krista Lamb

On June 6, Dr. Gary Lewis, Scientific Co-Lead for Diabetes Action Canada, and outgoing Director of the Banting & Best Diabetes Centre, received the 2022 Edwin Bierman Award from the American Diabetes Association (ADA). This award is presented to a researcher who has made outstanding scientific contributions to the understanding and treatment of diabetes and macrovascular complications. It was presented as part of the ADA Scientific Sessions in New Orleans, where Lewis was a speaker.

Lewis, a clinician-scientist at the University Health Network, has long been interested in how his work could support the overall health of people living with diabetes. Over the last two decades, his research has made a significant contribution to the understanding of intestinal lipoproteins. “I have, from the time of my training, been very interested in this whole issue of cardiovascular disease and people with type 2 diabetes and prediabetes and metabolic syndrome. It’s very complex as to why people with diabetes have such high rates of heart disease, and it’s multifactorial. But one reason is that they have abnormal blood fats, also called lipoproteins,” he says.

When he started his work in this area, the focus was on the liver, which was known to overproduce triglyceride-rich particles, raising their levels in the circulation. It was also known that triglyceride-rich lipoproteins, derived from the intestine, are increased after a meal. But the focus on intestinal particles was on their delayed clearance from the circulation rather than an increase in their production rate.  An associated abnormality when these particles are in excess, is that high-density lipoprotein (HDL), considered “good” cholesterol, is low. Yet, just raising the amount of HDL through medications or diet doesn’t result in a reduced risk for heart disease. These were puzzles they wanted to solve. Why does the liver overproduce fat particles, does the intestine also overproduce fat particles and why is HDL low in those with prediabetes, metabolic syndrome and type 2 diabetes?

As with many scientific discoveries, a potential answer came about during a project focused initially on the liver. Working with Syrian golden hamsters, Lewis’s collaborator, Dr. Khosrow Adeli at Toronto’s Hospital for Sick Children, decided to also culture cells from the animal’s intestine. They were surprised to see that these insulin-resistant hamster cells had a three to four-fold increase in triglyceride-rich chylomicrons (a form of lipoprotein). “It’s not just the liver, but the intestine seems to get insulin resistant, and overproduce these chylomicrons. And we didn’t really know that before. That was an “aha” moment,” says Lewis “We studied the effect of all the things that we had previously done on the liver [in the intestine] and we showed, to our surprise, that this fat production by the intestine is highly regulated, in many cases by the same factors that control liver fat particle production.”

Further research led them to look at the role the gut hormones GLP-1 and GLP-2 might play in this process, and how they may help in finding treatments. Prevailing theory at the time was that the amount of fat you ate was exclusively the driver of the fat particles produces by the intestine. While this is still true, Lewis’s team saw that there were other factors, like hormones, playing a role in regulating fat particle production by the intestine.

In uncovering this, and their many other important findings, Lewis is quick to point out that they did not know exactly what they were looking for or what they might find—hallmarks of basic or foundational science.

“This was a project full of surprises. The first surprise was that the intestine overproduces lipoprotein particles in insulin resistance and diabetes. The second surprise is that there’s a whole second order of regulation that goes beyond what you eat: hormones, neural networks, nutrients, etc. Surprise number three came from a gut hormone called GLP-2,” explains Lewis, whose research showed that the hormone was not stimulating new secretion of lipoproteins, but that it pushed out and mobilized chylomicrons already formed but residing temporarily in the intestines. “The forth big surprise is that pumping of the intestinal lymphatics, which are like a drainage system, are actively regulated by factors that also determine the rate of intestinal fat particle production.”

And the surprises continue, mobilizing Lewis to keep pushing to learn more. “It’s curiosity driven. One thing leads to another thing. We’re just curious. We don’t know. Are we going to have an impact? Maybe not. Is it going to lead to some new treatment or some new understanding? We don’t know. We just keep doing the experiments based on what we’re seeing and we keep pushing,” says Lewis, who is a passionate advocate for this type of foundational science. This is the work that must be done in order to better understand our physiology and find new and better ways to treat or even eradicate disease.

It is this passion that has fueled his work with the University of Toronto’s world-renowned Banting & Best Diabetes Centre, where he has spent eleven years as director. Throughout his tenure, which ends in June 2022, Lewis has pushed to ensure continued funding for this type of research. “You need to encourage and support people who want to do curiosity-based research. I’m not going to tell people what to study. If you want to study a particular receptor on a T cell, because it’s interesting to you, that’s what we need to support. Because we don’t know where it’s going. Basic fundamental science must be supported.”

The continuation of this work—supporting clinically-relevant, patient-oriented research—is what he does with Diabetes Action Canada. The organization is currently working on several projects where people with lived experience are involved in research development and dissemination, a new and innovative way to bring greater understanding of the important work being done in labs.

The Diabetes Action Canada (DAC) Training and Mentoring Program and Diabetes Canada in collaboration with The Canadian Islet Research and Training Network (CIRTN), The Canadian Child Health Clinician Scientist Program (CCHCSP), the Empowering Next-generation Researchers in perinatal and Child Health (ENRICH) and the Maximize your Research on Obesity and Diabetes (myROaD) training platforms are excited to announce the ULTRA Scientists Day (ULtimate Trainee Retreat to Advance Scientists Day)! This event will take place on Wednesday, November 9^th, 2022, 8:30 a.m. – 4:40 p.m., in Calgary, Alberta prior to the 2022 Diabetes Canada/Canadian Society of Endocrinology and Metabolism (CSEM) Professional Conference and Annual Meetings held on November 9^th-12^th, 2022.

This is an excellent opportunity for learners to advance their skills in patient engagement in research and intersectionality, writing a knowledge mobilization/translation plan, peer mentorship and conflict resolution. Additionally, our Pub Scientifique is back! Our panelists are looking forward to discussing and answering career-related (and life-related) questions from trainees in an informal and fun setting.

Those who wish to register for the ULTRA Scientists Day must submit an assignment for the writing workshop to secure their registration. This assignment must include a two-page research proposal and a half-page knowledge translation plan. The assignment will be evaluated and discussed by your peers in breakout groups and by seasoned reviewers during the workshop. You can submit a recent or upcoming studentship application, as you will get feedback from other trainees and faculty that may strengthen the proposal or an entirely new submission for a project you would like to tackle in the future. NOTE: All details regarding the assignments can be found in the registration form.

Diabetes Action Canada will provide the following benefits for the first 30 trainees who register for the ULTRA Scientists Day:

• Complimentary Diabetes Canada/CSEM Professional Conference registration from November 9^th-12^th (Early bird registration: $248/person includes a free membership to Diabetes Canada)
• 2 nights’ accommodation (November 8^th and 9^th, 2022)

To register for the ULTRA Scientists Day, please click on the following link and complete the form: ULTRA Scientists Day registration. In the registration form, you will also find the link and code to register for the 2022 Diabetes Canada/CSEM Professional Conference.

If you have any questions/comments concerning this event, please email Michelle Murray at michelle.murray@umoncton.ca.

By Krista Lamb

While the involvement of people living with diabetes has become a critical and effective part of the research process in recent years, it is still not the norm in basic or fundamental research. This is the sort of lab-based research that looks at the physiological aspects of diabetes, such as cells and genes. For many researchers in this area, it was unclear how lived experience could play a part in their process.

This is starting to change, and a recent publication led by Dr. Rob Screaton at Sunnybrook Research Institute is showcasing the important role of those with lived experience in basic science projects.

The idea for this project was conceived at the Canadian Islet Research and Training Network Islet Biology course at the University of Toronto in the summer of 2021. It was spearheaded by students, who developed a review of the islet and diabetes research done during the pandemic. What made this process unique was how the research team consulted Diabetes Action Canada Patient Partners to learn from their perspectives about islet research and how they understood progress in the field.

In addition, the team wrote the entire review in both an academic version and one that used lay terms and was easy to understand by those in the public.

“There were several real positives associated with partnering with people living with diabetes on this islet biology literature review,” says Screaton. “How to incorporate patient perspectives into bedside research that involves patients directly, in tangible ways, is relatively straightforward, but how to engage patients in fundamental research has so far lacked a roadmap. In this project, we were able to inform patients about current research and gain their perspectives on what was most meaningful to them. A strong message we heard was that the use of stem cells as a potential therapy was met with trepidation.”

Screaton and all of the team members were impressed with the level of interest and valuable insights that participants brought to the table. He felt it was a good opportunity to showcase ways in which these types of collaborations can be valuable to basic science. “This project, starting with a review of the current literature, has opened up many new and exciting partnership opportunities between researchers and Patient Partners, to allow for the translation of knowledge and for underlining the critical importance of fundamental research to finding new therapies and cures,” he says.

“One idea that emerged was that perhaps all scientific publications, in addition to a scientific summary and even graphical abstracts, both current standards, should also have a lay summary. Written by the scientific authors in partnership with people affected by the disease in question, this would help communicate not only the exciting research results but also its significance and potential importance to people affected by the disease. The thirst for knowledge is not just in the researcher population – it’s in the populations of people living with or affected by disease as well.”

The paper is open access and available now on the website of the Canadian Journal of Diabetes.

In April, Diabetes Action Canada’s Digital Health Solutions for Learning Health Systems program received a Data Champions Pilot Project Grant from the Digital Research Alliance of Canada. This grant will support the ongoing work of our team as it looks at ways to use health data to improve outcomes for people living with diabetes.

“Over the last six years, Diabetes Action Canada has done extensive work to find ways to effectively harness the power of data to help those with diabetes. From our National Diabetes Repository to our collaborative initiatives with organizations across Canada, we have seen how valuable data is in improving outcomes,” says Tracy McQuire, Diabetes Action Canada’s Executive Director. “This funding from the Digital Research Alliance of Canada will ensure we can continue and expand on this work by supporting the salary of a team member who is dedicated solely to this area.”

The Digital Research Alliance of Canada plays a critical role in advancing the Government of Canada’s National DRI Strategy. It coordinates and funds activities related to and including Advanced Research Computing, Research Data Management, and Research Software. The Data Champions Grant, “aims to build national research capacity and deliver on the Alliance’s mandate to create a broad and integrated Canadian digital research infrastructure (DRI) ecosystem. Specifically, the call will address the needs of the research community related to Research Data Management (RDM), while promoting an equitable and inclusive DRI environment in Canada.”

2020-23 Research Alliance Data Champions: https://alliancecan.ca/latest/news/announcing-2022-2023-data-champions

Diabetes Action Canada researcher, Dr. Maureen Markle-Reid, is the Scientific Lead for this program and Diabetes Action Canada’s Dr. Rebecca Ganann is the Collaborative’s acting lead.

By Krista Lamb

On March 31^st, the Government of Canada announced new funding to support training and development programs in the health care space. Diabetes Action Canada is pleased that our new Training and Mentoring program co-lead Dr. André Tchernof at the Université Laval, received one of these awards, entitled Maximize your Research on Obesity and Diabetes (myROaD): Canada-wide training and mentoring platform from molecules to communities.

The project, which aims to support early-career investigators in the diabetes, obesity and cardiometabolic space, will help ensure training excellence for those who are planning a career in this area. “It’s great timing,” says Tchernof, who collaborated with health care programs across the country to develop the plan for this platform. “When we met with all the investigators at centers across Canada, we were really impressed by the enthusiasm of all the teams.”

As with every Diabetes Action Canada project, Patient Partners will be involved at every step of the process. The Strategy for Patient-Oriented Research (SPOR) Support Units from Ontario, Quebec and the Maritimes participated in the planning, as did multiple patient-focused organizations. Tchernof notes that because there is a SPOR Unit at the University of Laval, where his lab is, he expects they will be very involved with every aspect of the project as it moves forward.

The new platform, which will have an emphasis on equity, diversity and inclusion, will provide interdisciplinary training and mentorship that will help participants develop the skills they need to excel in the field. This will include things like science communication, knowledge mobilization and grant writing, as well as information specific to diabetes and obesity research.

Diabetes Action Canada has always advocated for the incorporating of sex and gender and Indigenous Ways of Knowing in research and is pleased to see this as a requirement of this grant. The program will also support training in unconscious bias, which is an essential skill for students and trainees.

“In a time when relying on scientific evidence has never been more important, our government recognizes the need to invest in the next generation of qualified health research talent. This new platform will help fill a gap in the career development opportunities available to trainees and early career researchers and will allow Canada to create the scientific knowledge we will need to build a more resilient future,” said The Honourable Jean-Yves Duclos, Minister of Health in the government’s announcement.

Read the CIHR announcement here!

A special issue of Healthcare Quarterly focuses on the impact of patient-partnered research in Ontario.

Several of the featured projects are from Diabetes Action Canada researchers and provide finding from work with Diabetes Action Canada Patient Partners.

Dr. Rebecca Ganann from McMaster University co-authored an article on Empowering and Accelerating Impacts of Patient-Oriented Research.

Dr. Monica Parry co-authored an article on Building Capacity for Patient-Oriented Research: Utilizing Decision Aids to Translate Evidence into Practice, Policy and Outcomes.

Read the special issue online now.

By Krista Lamb

As Diabetes Action Canada completes its first six years of funding, our Network membership is also shifting. One major change is that Dr. Alex McComber, who has expertly led our Indigenous Patient Circle and co-led our program on Indigenous Peoples’ Health since 2016, will be stepping down from this role.

McComber, a member of the Kanien’kehá:ka community of Kahnawake, came to Diabetes Action Canada with a wealth of experience from his work with the Kahnawake School Diabetes Prevention Program, where he was a Diabetes Prevention Intervention Facilitator, Training Coordinator and Executive Director. He has been an incredible asset in helping Diabetes Action Canada develop research programs that had Indigenous Patient Partners at the forefront, and which supported his message of personal empowerment for healthy lifestyles as a key to healing multigenerational trauma.

“You cannot talk about diabetes in Canada without beginning with Frederick Banting and Charles Best. You cannot talk about Indigenous-led community-based diabetes prevention, care and scholarship without first talking about Dr. Alex McComber,” says Dr. Jon McGavock, who co-leads the Indigenous Peoples’ Health program for Diabetes Action Canada. “Every scientist in my generation references the ground breaking work, guided by Alex’s vision for and respect of Haudenosaunee ways of knowing and doing. From an academic standpoint, this work shaped community-based research and Indigenous Health research in Canada as we know it today. To work alongside Alex, is to work alongside one of Canada’s foremost scholars in our field.”

McComber, who is an Assistant Professor with the Dept of Family Medicine, Faculty of Medicine and Health Sciences at McGill University in Montreal, will continue his research in the areas of diabetes prevention, Indigenous health promotion, community mobilization, mentorship and Indigenous research methodologies.

“Diabetes Action Canada was so fortunate to have Alex lead the Indigenous Peoples Patient Circle and guide the vision for how our network engaged with and honoured Indigenous voices in Canada,” says McGavock. “Alex’s academic accomplishments and generation-shaping vision for Indigenous health research, pales in comparison to his humanity and friendship. The world is a better place because of the gift the creator gave us—Alex McComber. A warrior whose commitment to justice for his people is matched by the size of his heart and love of his friends and the people he works with. Working with Alex was one of the greatest gifts of my career and life thus far. My life is richer, and my world is a better place because of the gift the creator gave me in the form of Alex’s friendship and mentorship. I hope this is the beginning of the next chapter in that relationship. Niá:wen ki’ wáhi, Alex.”

Diabetes Action Canada’s Indigenous Patient Circle is now co-chaired by Tamara Beardy.

By Krista Lamb

On March 3^rd, Brain Canada and JDRF announced the winners of their Addressing Mental Health in Type 1 Diabetes Team Grants competition. Diabetes Action Canada was thrilled that one of our supported projects was selected.

Dr. Peter Selby from the Centre for Addiction and Mental Health (CAMH) will be the lead investigator looking into “Technology-enabled comprehensive care for young adults with type 1 diabetes (T1D) experiencing diabetes distress”. He is joined by co-investigators Drs. David Castle and Gillian Strudwick from CAMH and Dr. Diana Sherifali from McMaster University, who also co-lead the newly established Mental Health and Diabetes research program for DAC, as well as Dr. Bruce Perkins from the Leadership Sinai Centre for Diabetes and Dr. Peter Senior, Director of the Alberta Diabetes Institute, who lead the Innovations in T1D program. Five Diabetes Action Canada Patient Partners helped develop the grant application and they will be at the table throughout the planning for this research proposal.

This project looks specifically at co-developing effective supports to help people between 18 – 29 with T1D manage diabetes distress, a condition which affects more than 40% of those living with the condition. Diabetes distress is the emotional burdens and worries that accompanies the need to constantly self-manage diabetes.

“We have heard from people living with diabetes how important and how real diabetes distress is,” says Perkins. “This team is figuring out how to help people identify distress, and how to help deal with it using virtual care. We are confident that this could change the way the health care system actually helps real people with real issues in an efficient way.”

With an increasing number of people using technology to help them manage their diabetes, this project incorporates proven technologies like video chat and text messages to offer mental health support. The program being developed uses techniques from, The Optimal Health Program, which was designed to explore the origin of wellbeing within every person, and to support those who use it to promote self-agency in the face of life’s challenges. With trained mental health and diabetes experts guiding the process, the hope is to safely reduce barriers to needed resources.

“To improve patient-centred approaches, we will be able to co-design and test technology to bridge the gaps in care delivery between the mental health system and diabetes care and empower people to manage their own mind-body wellbeing,” says Selby.

For the Patient Partners involved in the research planning phase, access to appropriate support systems and education about how to find these resources were key priorities. Currently, diabetes-focused mental health interventions are limited, especially outside major city centres. It is also difficult to find health care providers with experience diagnosing or treating diabetes distress. Technology may be able to help by leveraging the available resources and reducing barriers to access, but it can only help if it is designed with the unique needs of people living with diabetes at the forefront.

“I think everyone with T1D struggles at some point with diabetes distress and mental health, but rarely is this raised with health care providers,” says Senior. “It would be easy for researchers to propose a solution based on assumptions or their narrow perspective. However, unless we take the time to hear from people living with diabetes about how they experience the problem and have them direct the design of a solution, there is a huge risk that we will miss the mark.”

The research team also includes Diabetes Action Canada researcher Dr. Joe Cafazzo and the Connect1d Canada team. The project will begin the initial phase of the project this spring.