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.

By Krista Lamb

In February, BMJ Open Ophthalmology published a paper by Diabetes Action Canada researchers: Diagnostic accuracy of teleretinal screening for detection of diabetic retinopathy and age-related macular degeneration: a systematic review and meta-analysis

The paper, which looks at the diagnostic accuracy of teleretinal screening for the detection of diabetic retinopathy and age-related macular degeneration (two of the most common retinal diseases seen in most North American clinical practice), was part of a research project led by Dr. Tina Felfeli. Dr. Felfeli is a resident physician in the Department of Ophthalmology and Vision Sciences at the University of Toronto, and a PhD student in Clinical Epidemiology at the Institute of Health Policy, Management and Evaluation, University of Toronto as a part of the Integrated Physician-Scientist program.

The research team found that teleretinal screening is highly accurate for detecting diabetic retinopathy, while this type of screening for age-related macular degeneration is promising but needs more research.

This project was a systematic review of the published research on this topic and a meta-analysis, which means the team comprehensively examined of all the relevant literature available to see if there were overall messages and conclusions that could be drawn. They also evaluated the quality of the studies and looked at the ways in which the research should be interpreted. These types of studies, Felfeli explains, “serve as an overarching guide and summary of all the evidence we have available to date, and they can really inform decisions and guide future research by identifying gaps in the literature, or gaps in the research that is available so that future studies can be conducted in a better manner.”

Teleretinal screening has been a focus for Diabetes Action Canada’s research teams, as it offers a cost-effective way to increase access to eye screening for those with diabetes. Traditionally, eye screening is done in the office of an eye care provider, but access remains a barrier for many—especially those in remote communities or from marginalized groups. Teleretinal screening uses technology to check the eyes of patients remotely, and then those who show signs of diabetic retinopathy can be referred to a specialist.

Felfeli’s team looked at 28 articles published between 2010 to 2021, which showed great promise for teleretinal screening for diabetic retinopathy in particular. This was encouraging, as was the ability to share this information with more people in an open access journal. “We really wanted patients, clinicians and scientists to have zero barriers to being able to benefit from this data. Having Diabetes Action Canada as our collaborator really opened up the opportunity for us to have the funding to be able to make this data and this really important information available publicly.”

Read the full paper on the BMJ Open website.

In February, myhealthdatapath.ca launched. With support and information from Diabetes Action Canada staff and researchers, this new resource aims to help people feel more confident about the ways in which their health data is shared to support research.

When it comes to health data, many people don’t understand how it is collected and the many ways in can be used (completely anonymously) to support better health outcomes for everyone.

My Health Data Path explains what data is, how it is generated, how it is anonymized, and some of the responsible uses for this data. It walks users through the journey or their data using easy-to-follow dialogue and patient-experience examples from our healthcare system.

“The goal is to show patients that there are meaningful connections in data,” says Conrad Pow, Diabetes Action Canada’s Senior Project Manager, who has been supporting this project. “We want to show how data can save lives.”

Visit myhealthdatapath.ca to learn more!

Join us on Thursday February 10, 2022 at 12 pm – 1 pm ET

Having a social media presence has never been more important for those working in health care and science. Whether it’s helping to educate and inform the public, developing a sense of community, or networking with peers from around the globe, social channels can open doors and help you build your personal brand.

Diabetes Action Canada’s Communications Lead, Krista Lamb, is an author and science communicator who has a deep love for #ScienceTwitter and doctors who TikTok. In this webinar she will go over some of the tips and tricks to help you communicate authentically and appropriately.

You will learn:
• Why we need scientists in these spaces
• How to select the right platform(s) for you
• The best ways to build community and your personal brand
• How to avoid the pitfalls and perils of social networking

This webinar will not be recorded and is only available live. Be sure to join us!

Register now!

About the speaker

Krista Lamb is a writer, communications professional and podcast producer and host.

As the Director of Krista Lamb Communications, she specializes in helping translate complex medical, scientific and health-related topics into interesting and understandable stories for diverse mediums.

In addition, Krista is the producer and host of the Diabetes Canada Podcast, which won the Canadian Podcast Award for Outstanding Health and Fitness Series in 2020. She also hosts the From Beta Cells to Bicycles podcast for the BC Diabetes Research Network and the Actions on Diabetes Podcast with Diabetes Action Canada. Throughout her career, she has written extensively about health and research topics and she currently provides communications support for a wealth of Canadian not-for-profit organizations.

Her first book, Beyond Banting: From Insulin to Islet Transplants, Decoding Canada’s Diabetes Research Superstars, will be released by Rock’s Mills Press in early 2021.

Follow her updates on Twitter @kristalambcomms.

In December, Diabetes Action Canada member Dr. Bruce Perkins and his collaborators were awarded a Diabetes Canada End Diabetes: 100 Award.

Their project, which will incorporate Patient Partners at all levels, looks at ways to reduce and prevent diabetic ketoacidosis (DKA) in type 1 diabetes. The research team will work to identify factors that may increase the risk of DKA, define ways that people with diabetes can mitigate DKA and then create an educational tool to help increase awareness around factors that can reduce risk. The team will then test the tool to ensure it is effective and helpful.

Because DKA is a common and potentially deadly complication in type 1 diabetes, this project is particularly important to those living with diabetes and to their caregivers and health care providers. For Perkins, it also offers the opportunity to continue his work looking at the potential for using a newer form of drug therapy called sodium glucose transport inhibitors (SGLTis) in those with type 1 diabetes. Currently, the therapy is being used with much success in those with type 2 diabetes, but the risk of DKA has meant it is not available for those with type 1 in North America.

“Despite improvements in monitoring and treatment over the last 100 years, DKA continues to be an ongoing and very frightening issue for people living with type 1 diabetes,” says Perkins. “This means that new therapies and medications, like SGLTis, which have shown the potential for positive outcomes are not currently available for those with type 1. Our study will look at ways to help everyone with diabetes reduce the risk of developing DKA and potentially open the door for new drug therapies in the future.”

In addition to the Perkins lab, a Diabetes Action Patient Partner, Doug Mumford, will be a co-lead on the project. Diabetes Action Canada researcher, Dr. Noah Ivers, will also be a collaborator, helping to support the development of the educational tool and its implementation. It is anticipated that a large number of patient co-researchers will be involved throughout the project to ensure the outcome meets the needs of the type 1 diabetes community.

By Krista Lamb

In 2022, we are celebrating big changes at Diabetes Action Canada. In January, Dr. Catharine Whiteside, who has led the organization in her role of Executive Director since its inception, has stepped into a part-time role as Diabetes Action Canada’s Director of Strategic Partnerships. Tracy McQuire, will transition into the role of Executive Director, steering the organization forward as we plan for the next phase of development.

“We are incredibly grateful to Cathy Whiteside for the work she has done as Executive Director,” says Dr. Gary Lewis, Scientific Co-Lead at Diabetes Action Canada. “Her tireless dedication to supporting the research community and the needs of those living with and affected by diabetes has helped build a solid foundation for the organization’s future growth. We are lucky that she will be continuing in a new, part-time, role to further the many collaborations and partnerships she has fostered during her time as ED.”Dr. Whiteside, who was previously the Dean of Medicine and Vice Provost Relations with Health Care Institutions at the University of Toronto, will continue to serve in multiple roles in the research community. She is the Board Chair for the Banting Research Foundation and a Director and Vice Chair of The Scarborough Health Network Foundation.

McQuire has held the role of Manager, Research Operations, since Diabetes Action Canada launched in 2016. She has led the organization’s administrative processes through multiple rounds of funding and been a co-lead on the Innovations in Type 1 Diabetes program. She is a passionate advocate for the diabetes research community whose dedication to patient-oriented research has made her invaluable to the organization.

“We are thrilled to be able to promote Tracy McQuire into the role of Executive Director,” says Lewis. “Tracy has been a driving force behind Diabetes Action Canada’s success and I know she is the perfect person to lead us into the next stage of our development.”

This month, Dr. Charles de Mestral and his team have a new paper in the JAMA Network Open journal. The paper, A Population-Based Analysis of Diabetes-Related Care Measures, Foot Complications, and Amputation During the COVID-19 Pandemic in Ontario, Canada, looks at the care of 1.4 million Ontarians living with diabetes during the pandemic versus before. The team hoped to clarify the impact of the pandemic on rates of diabetic foot ulceration and amputation, as well as diabetes care measures that influence amputation risk.

Using data for the whole province of Ontario, available from ICES, De Mestral’s team found that the outcomes did not look as stark as data from other countries had suggested. “Despite limited ambulatory in-person assessment by physicians, hospital avoidance and restrictions to scheduled hospital-based procedures, excess leg amputations were not observed among people living with diabetes during the first 11 months of the COVID-19 pandemic in Ontario, Canada,” De Mestral says.

While this is encouraging, the team also made clear that as the pandemic wraps up, improved prevention and treatment of diabetic foot complications will be necessary to maintain these results.

By Krista Lamb

In late November, the Canadian Institutes for Health Research (CIHR) announced new funding for its Team Grant: Diabetes Mechanisms and Translational Solutions as part of the organization’s 100 Years of Insulin program. Alongside CIHR co-funders Diabetes Canada, JDRF Canada and Kidney Foundation of Canada, exciting new research programs were announced. Among them, were several with a clear focus on patient-oriented research and where the teams worked with Diabetes Action Canada Patient Partners on their grant applications.

The SUGARNSALT Team Grant looks at “Sodium glucose co-transport-2 inhibition diabetes and kidney function loss in type 1 diabetes”. The team is being led by Dr. David Cherney from UHN Research and includes co-investigators Dr. Bruce Perkins, Dr. David Campbell and Dr. Anita Layton – all of whom are Diabetes Action Canada researchers.
“Patient partners have been involved from the beginning to include trial components that are relevant to their experiences,” explains Cherney. “We have included components of the trial that are meaningful to them, including measures of kidney function, and also included an entire aim related to patient preferences and reported outcomes. We will also be meeting on a regular basis to make sure out methods and approaches remain patient focused.”

Led by Dr. Patrick MacDonald from the Alberta Diabetes Institute, a second funded project looks at “A deep phenotyping network for understanding human islet variation in health and diabetes”. For their application, the team brought together members of the Diabetes Action Canada Collective Patient Circle to ensure the work met the needs of those living with diabetes.

“We appreciate this funding from CIHR-INMD and JDRF, and the support we received from Diabetes Action Canada and their Collective Patient Circle for input and guidance as we developed this program,” says MacDonald. “Our project seeks to build a cellular and molecular atlas describing pancreatic islets in both health and disease, with a goal of making this resource available to answer many questions from the broader scientific and health communities. Interaction with Diabetes Action Canada, and engagement through a patient focus group, taught us much about the kinds of questions and the sources of data that are important and also about how we can better integrate patient feedback with our program going forward. We will continue to develop these important interactions to help bridge gaps between cellular work on islets and the needs of the community.”

Having received ongoing support from Diabetes Action Canada, Project OPEN, led by Dr. Valeria Rac from UHN Research, has a new infusion of funding for its project “Preventing vision loss from diabetic retinopathy: Guiding primary care diabetic retinopathy screening in Canada through the use of provincial healthcare administrative data.”

The only team to have a Patient Partner listed as a PI, the group has benefitted greatly from the inclusion of Debbie Sissmore, who lives with vision loss due to diabetic retinopathy, and her husband, Malcolm. During the application process, this team also had focus groups facilitated by Diabetes Action Canada. During this consultation, participants emphasized the need for a more systemic approach to the prevention of diabetic retinopathy.

“Our Team Grant application had a very holistic approach to engaging Patient Partners,” says Dr. Valeria Rac. “The insights gained from Debbie and Malcolm Sissmore and our focus group fully guided our application. In line with the Diabetes Action Canada approach, we wanted to make sure that patients’ perspectives and needs were at the forefront, and we will continue to do that throughout our diabetic retinopathy screening project.”

Led by Dr. Bruce Verchere at the University of British Columbia, the fourth funded team is looking at “Immunometabolism in diabetes: harnessing metabolic crosstalk between islets and immune cells for therapy”. They drew on the input from the Collective Patient Circle, and Diabetes Action Canada facilitated focus groups as they designed their application, and found the experience extremely valuable.

“One hundred years since the discovery of insulin by Canadian researchers, there is no cure. And just what is a “cure”? In a patient engagement session in partnership with Diabetes Action Canada, our team learned from T1D patients and caregivers what a cure meant to them,” says Verchere. “For most, they wanted to be free of the constant disease burden; one patient described, ‘to live a life that looks like anyone without diabetes; no devices, no insulin, no complications, no anxiety.’ Our team learned the urgency to move research forward and the importance of communication findings to all.”

Diabetes Action Canada is thrilled to see patient-oriented research at the core of so many of these funded projects and looks forward to working with each team as they move forward to ensure the needs of those living with diabetes are front and centre.

Recently, Diabetes Action Canada lost one of our long-standing Patient Partners.  Jaime Broja was an active member of our community and a passionate advocate for diabetes research.

Jaime was the first Patient Partner for the Diabetes Research Group at the Centre de recherche du CHUS  in Sherbrooke and his involvement helped to shape how that team saw patient partnership. He was a member of Diabetes Action Canada from the very beginning and his contributions were deeply meaningful to our work.

“Jaime was a strong advocate for diabetes research, especially on the prevention of this disease,” says Dr. André Carpentier, the Scientific Director at Centre de recherche du CHUS. “He passed away at home on October 31^st, surrounded by his loving wife, his two sons and his daughter. We miss him.”

In the November Diabetes Awareness Month Globe and Mail supplement, Dr. Gary Lewis is interviewed about the 100th anniversary of the discovery of insulin and the importance of patient-oriented research.

You can read the article on the Globe and Mail website now!

In Canada, where there are great differences in terms of coverage for diabetes technologies, like insulin pumps and continuous glucose monitors, it is important to know if access and uptake are related.

That’s why Diabetes Action Canada researchers Drs. Alanna Weisman, Gillian Booth and Bruce Perkins, working with medical student Cimon Song, used the National Diabetes Repository to study this issue.

Their paper, Impact of government-funded insulin pump programs on insulin pump use in Canada: a cross-sectional study using the National Diabetes Repository, was published in BMJ Open Diabetes Res Care in October.

This research, which was supported by Diabetes Action Canada, was able to study adults with type 1 diabetes across five different provinces via the National Diabetes Repository (NDR). The NDR is a tool researchers can use to better analyze information about people living with diabetes across Canada in order to support improved health outcomes and prevent complications. Oversight of the use of the data is through dedicated Patient Partners working alongside researchers, healthcare providers and experts in privacy and law.

Weisman says the key finding from this study is that providing funding for insulin pumps makes this technology more accessible. This in and of itself may not seem surprising, but as the area had not been studied before it was important to confirm. The team also showed that, while overall access is improved, there are other factors that need to be considered. “An interesting finding was that even in provinces with funding for insulin pumps, we observed disparities in insulin pump use with those from lower-income neighbourhoods still being less likely to use insulin pumps despite the funding programs,” she explains.

This opens up the need to study this area further, including identifying and understanding barriers to insulin pump use that go beyond financial considerations. “Previous research has shown that some of the other factors include biases of the health care providers, access to expert teams, and education,” explains Weisman. “Future work in this area should focus on how insulin pumps and other diabetes technologies can be implemented effectively, and likely this will require a more comprehensive approach than just providing funding.”​

Moving forward, Weisman hopes to validate these findings by studying other data sources, as well as to look more deeply into the issue of non-financial barriers to access.

Connect1d Canada, a digital platform that allows those with type 1 diabetes (T1D) to easily learn about and participate in innovative research programs from across Canada, is pleased to announce their partnership with the U.S.-based T1D Exchange, a non-profit organization that drives meaningful research and innovation in the treatment of type 1 diabetes.

The T1D Exchange Registry is an online research study open to people living with T1D in the US.  To date, the Registry has more than 16,000 members. The Registry tracks patient-reported disease progress over time, and also connects patients to other research opportunities for their consideration.

This partnership allows both organizations to share learnings and expertise, and to discuss strategies, successes and challenges in supporting better outcomes for people with T1D across North America. The teams are using this collective knowledge to improve the experience for all those with T1D who would like to take part in research.

“T1D Exchange has highlighted key challenges faced by people living with Type 1 diabetes that must not be ignored. I am excited that this partnership with Connect1d Canada will be a key step in better addressing the needs of Canadians with T1D,” says Dr. Peter Senior, an endocrinologist, Director of the Alberta Diabetes Institute and the Charles A. Allard Chair in Diabetes Research, who is the scientific co-lead for Connect1d Canada.

“We are excited to join forces with Connect1d Canada in an effort to amplify both initiatives and to increase participation in research,” said Wendy Wolf, PhD, VP of the T1D Exchange Registry. “Collecting the voices and experiences of those living with T1D provides a more complete picture than relying on clinical data alone.”

The Connect1d Canada platform was developed in partnership with those living with T1D and is supported by the Diabetes Action Canada research network. Diabetes Action Canada’s mandate ensures that every research program it supports has people living with diabetes at the table from conception to implementation. For Connect1d Canada, this has meant intensive consultation with the T1D community and having Patient Partner Kate Farnsworth as a co-lead on the project.

Working with the T1D Exchange will ensure a range of new and diverse experiences and opinions from across North America can be considered as the organizations work towards the shared goal of accelerating the T1D research process, especially in groups that are not typically engaged in research.

Researchers and those with T1D in Canada can now register with Connect1d Canada.

People with T1D in the U.S. can register with the T1D Exchange.

Media inquiries from Canada:                                        

Krista Lamb
Communications Lead, Diabetes Action Canada
Kristalamb@gmail.com
647-403-5627

Media inquiries from the U.S.:

Deborah Taylor
Director of Marketing, T1D Exchange
dtaylor@t1dexchange.org
617-671-0450

About Connect1d Canada

Connect1d Canada is a digital platform that allows those with type 1 diabetes (T1D) to easily learn about innovative treatments from across Canada while contributing to clinical research in the areas that matter most to them. Connect1d Canada also allows researchers to recruit and engage with patients with greater ease, thereby improving the research process by accelerating recruitment and opening up research opportunities to a more diverse group of Canadians living with type 1 diabetes. Developed and designed with our patient-partners, Connect1d Canada was created by and for the T1D community with the goal of revolutionizing the way research is conducted.

About Diabetes Action Canada

Diabetes Action Canada is a pan-Canadian research organization, launched in 2016, funded by the Canadian Institutes of Health Research’s Strategic Patient-Oriented Research program, non-profit organizations (e.g. Diabetes Canada, JDRF), and private sponsors, over 5 years. Diabetes Action Canada focuses on bringing patients, their caregivers and researchers together to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns. We partner and collaborate with university research teams across Canada, non-profit organizations such as JDRF and Diabetes Canada, and provincial governments to plan, execute and evaluate these research projects so we can improve patient outcomes and experiences.

About T1D Exchange 

T1D Exchange is a leader in harnessing data to advance type 1 diabetes (T1D) care and outcomes by driving collaborative change. Through real-world evidence and clinical data collection and analysis, our novel insights are identifying gaps in data and redefining best practices to improve the lives of those living with T1D. T1D Exchange actively supports quality improvement and innovation through its Quality Improvement Collaborative, patient registry, and data-oriented research services. Through a knowledge–sharing and collaboration-focused approach, T1D Exchange is accelerating real-world impacts by providing clinicians, researchers, industry partners and advocates with the resources and services they need for better decision support and population health management. A non-profit organization, T1D Exchange was established in 2010 with ongoing support from The Leona M. and Harry B. Helmsley Charitable Trust.

About the T1D Exchange Registry

The T1D Exchange Registry is a research study conducted online over time, designed to foster innovation and improve the lives of people with T1D. The platform is open to both adults and children with T1D living in the U.S. Personal information remains confidential and participation is fully voluntary. Once enrolled, participants will complete annual surveys and have the opportunity to sign up for other studies on specific topics related to T1D. The registry aims to improve knowledge of T1D, accelerate the discovery and development of new treatments and technologies, and generate evidence to support policy or insurance changes that help the T1D community. By sharing opinions, experiences and data, patients can help advance meaningful T1D treatment, care and policy.

The T1D Exchange Registry is simple to navigate, mobile and user-friendly. For more information or to register, go to www.t1dregistry.org.

By Krista Lamb

For Frank Tang, it was taking care of his elderly mother and helping her manage her type 2 diabetes that inspired him to get involved with research. She had lost a toe, developed diabetic retinopathy and was managing a wealth of complications. This meant Tang was often called on to assist with her many appointments, to manage her medications and to ensure her health care was properly managed.

This experience opened his eyes to what it was like to live with type 2 diabetes, which helped when he received his own diagnosis a few years ago. When he learned about research projects he could participate in at McMaster University in Hamilton, ON, he was eager to get involved. He wanted to learn ways to better manage the condition, as well as to support others.  “At McMaster, their major focus is on community, and I think that’s a huge departure from the traditional research that people have done.”

Tang has become an active Patient Partner in programs supporting older adults with diabetes. “Community care is very important here. There are people for whom English is not their first language who have diabetes, but they’re not aware of the care, management and attention they need to put into it,” he says. There is also a lot of misunderstanding about the condition. “Being of Chinese background, I have seen that  diabetes is always considered with stigma. You don’t want to talk about a family member having diabetes. There is this stigma attached to it, we don’t talk about this thing.”

For Tang, an understanding of the cultural community and their views on diabetes is needed to enact real change. While working with the Diabetes Action Canada Aging Community and Population Research program, he has been able to help researchers like Drs. Maureen Markle-Reid and Jenny Ploeg by sharing his experience as a person with diabetes and a caretaker of a parent who was not fluent in English. He knows that it can be frustrating for older adults to manage their care when they feel they are not understood, and he wants to be part of research aimed at changing this.

Tang also wants to help physicians understand that they need to meet their patients where they are at. For example, he has seen doctors advise an older adult non-English speaker to track their blood sugars using a computer spreadsheet. “It ain’t gonna happen,” he says with a chuckle, noting that many patients will need to rely on a family member to help with the spreadsheet, which is a huge barrier. “After a while, it gets very tiring to get someone to help with the recording. Now, what happens when you have to do the all the recording yourself?” For many older adults, computers are not easy for them to navigate. Add in a language barrier and this therapy is bound to fail.

With his own parents, he recalls attending appointments about their health and seeing how overwhelmed they were. They did not speak English fluently and the doctors were often speaking in terms that were far beyond what they could understand. Tang was often there to take notes, ask questions, and translate, but when he was not there he saw how it could turn into a case of broken telephone. “They don’t want to be honest with the doctor that they don’t comprehend this,” he explains, noting that when it comes to medications and therapies this breakdown in communication can be quite dangerous.

Tang is committed to continuing this work and using his voice and unique personal experience to encourage change for all those living with type 2 diabetes. “Once you get over this hurdle of communications, they start saying that, ‘Yes, we would like to find out what can be done, the medications that could help us,” he explains of older adults from diverse communities. It’s just finding the right way to open that door.

Interested in becoming a Patient Partner? Learn more here.

For Kamloops native Mike Alexander, a diagnosis of type 2 diabetes was a much-needed wake-up call. Alexander, an Indigenous artist and writer, had been struggling with addiction and an unhealthy lifestyle for many years when he got the news.

The diagnosis started Alexander on a journey to learn more about healthy living, changing his diet and exploring options for exercise that he might enjoy. After some consideration, he decided on the ‘go big or go home’ philosophy—beginning to train for a triathlon. “I deduced that I was good at self-destruction and I could apply myself wholeheartedly to that activity, and had done so for a long time. What happens if I decide to turn that energy into something positive?” he says. “I picked endurance sport because there’s an amount of pain involved with it that you learn to overcome through repetition. The mindset being that pain is something that is worth fighting through. I wanted to see what my midlife body could do. And not only is it physically amazing, but it’s had such a strong impact on my mental health as well. You keep on pushing to do the almost unbelievable and make it so that it becomes possible.”

A survivor of “the Sixties Scoop”, when many Indigenous children were removed from their homes to be raised in foster or residential care, Alexander was very aware that residual trauma and Colonialization had played a role in his health issues. Turning that energy towards something positive felt right, and a sport that allowed him to build towards a major goal was helpful.

“A full triathlon and Olympic distance triathlon, that seems like too much to comprehend. And life is kind of like that, as well. I can’t change everything overnight or over the course of a few months or years. This is a lifetime journey now. Diabetes is a lifetime journey. There’s things that I can do today.”

After his first triathlon in 2017, Alexander felt like he’d made the right decision to pursue the sport. “It’s a very rewarding experience to join the ranks of people that have dared to push themselves like that. And I found the people I spoke to have some pretty wild stories themselves. I think that people who are driven towards triathlon can come from some very colorful backgrounds, much like my own, and it’s so awesome to feel that brotherhood or sisterhood with other people who are just doing something phenomenal for themselves.”

Alexander has also become interested in diabetes research and advocacy in recent years. Speaking with friends at the National Indigenous Diabetes Association, he learned about opportunities to make a difference for the community. With his newfound coping mechanisms and the things he has accomplished, he wanted to share his story to encourage others who might be struggling.

“There’s two things really that I think about more than anything else. One being that I don’t see an awful lot of Indigenous triathletes and maybe I don’t need to. But what I do need is for Indigenous people to know that we can accomplish anything we set out to do, that there are no barriers in our heads that we can’t get over. There’s barriers in the world for sure, but if we turn inward to find that strength to do what seems like a good thing, then it can be done,” he says.

His second reason is to break down stereotypes that people may have about those of Indigenous background. “There are a lot of problems specifically with health care and delivery of services to Indigenous people that are based on stereotypes and racism. I want to show these folks that, “Hey, look at me, I’m not lazy, I’m not drunk. In fact, I’m doing something that you can’t even believe I’m doing. And I think that maybe that smashes the idea that we don’t have the same potential as anyone else or other folks.”

As a Diabetes Action Canada Patient Partner, Alexander is sharing his experiences as part of the Patient Circles, as well as speaking at events. He is hopeful that his voice can represent those at the table who have changed the trajectory of their diabetes diagnosis.

Interested in becoming a Patient Partner? Learn more here.

Diabetes Action Canada is devastated by the tragic discovery of the remains of 215 Indigenous children in an unmarked grave at the former Kamloops Indian Residential School in Tk’emlúps te Secwépemc Territory.

We are equally horrified by the uncovering of 751 unmarked graves by Cowessess First Nation in Saskatchewan. These graves, on the grounds of the former Marieval Indian Residential School, are presumed to be those of Indigenous children. These discoveries are a visible reminder of the harm of colonization on the lives of Indigenous families across Turtle Island.

These tragedies are also a reminder of the critical importance of meaningfully recognizing the traumatic role of Canada’s colonial past on the health of Indigenous people today and in the spirit of reconciliation, work alongside Indigenous communities to realize the Calls to Action laid out by the Truth and Reconciliation Commission, particularly during National Indigenous History Month.

Our Network believes in the critical importance of self-determination for Indigenous peoples at all levels of health and well-being. We support Indigenous-led research and its role in improving the health and well-being of First Nation, Inuit, Metis and Urban Indigenous communities. We will continue to support these programs and the important work of the Indigenous Patient Circle.

To our Indigenous colleagues, we are deeply sorry for the pain and suffering this has caused you.

Resources for those seeking support:

• National Indian Residential School Crisis Line (24-hour): 1-866 925-4419
• First Nations and Inuit Hope for Wellness Help Line: 1-855-242-3310 / hopeforwellness.ca

By Krista Lamb

In working-age Canadians, diabetic retinopathy is the leading cause of vision loss. This vision loss is often preventable with early detection and treatment. Even before the pandemic created a greater gap in services, 40% of people living with diabetes in Ontario had not had an eye exam for more than two years. Many of those people are from low income communities.

This gap is the reason Diabetes Action Canada researchers have developed Project OPEN.

The project uses medical records data to identify people who haven’t been screened, then community health reaches out to offer pre-screening, explains Dr. Michael Brent, a Diabetes Action Canada researcher and Associate Professor of Ophthalmology & Vision Sciences at the University of Toronto. “The patients loved it,” Brent says of the pilot project at Toronto’s Women’s College Hospital that validated the study idea. “If you can identify them, they will come.”

Project OPEN uses community health centres—currently 13 in the Toronto area with plans to expand to more than 70 across the province—to perform the outreach and arrange screenings.

A Diabetic Retinopathy Screening Program with mobile imaging equipment has been developed to target areas with low screening rates. Images and health data collected are uploaded to a secure server at Ontario Health.  Images and data are graded remotely by retinopathy specialists and care recommendations provided back to the primary care provider.

Having community health centers perform the outreach takes the burden off busy family practitioners, while ensuring that the work is done by health care workers that patients can trust. “They have really good primary care teams at the community health centres and they have good interactions with their patient population,” says Brent. “If they’re able to reach out to people living with diabetes we’re really hopeful that this will boost screening uptake for vulnerable populations.”

Currently, there is a disconnect with tracking eye exams. Electronic medical records don’t identify if someone has been screened and there is not a standard system to connect patients with eye care. Family doctors will suggest an eye check and may even provide information on local clinics, but they don’t have a method to follow-up or find out if the patient attended and what the outcome of the exam was. “Optometry is not required to send a letter back to primary care to complete the loop, so without the provincial health care data we really don’t know [if someone has been screened],” says Brent.

Project OPEN will be the first use of provincial digital health assets to enable population health management in Ontario. “It will allow patients to engage in their own health care, especially vulnerable populations, and it will build capacity for diabetic retinopathy screening,” he explains, while also building capacity for diabetic retinopathy screening through digital media and teleophthalmology.

“If we are able to identify diabetic retinopathy early enough, we can prevent vision loss and blindness, so screening programs are really important,” says Brent.

The project is being supported with funding from Fighting Blindness Canada. The Diabetes Action Canada Health Technologies and Assessment team, led by Dr. Valeria Rac, is also working on Project OPEN, learn more about their involvement in this recent article.

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.

Dr. Holly Witteman was seven years old when she was diagnosed with type 1 diabetes. She spent a month in the hospital learning to manage the condition; all of the hundreds of small tasks she and her family now needed to perform to keep her healthy and alive.

While her research does not focus solely on diabetes, her diagnosis has played an important role in her career and in her advocacy work.

A professor in the Department of Family and Emergency Medicine at the University of Laval in Quebec City, Witteman focuses on human factors engineering. She considers how information is presented to people and how to design systems that will work as intended for those who need them. “We look at what would help people naturally learn things and understand things and make them fluent,” she explains.

As a person living with diabetes, Witteman has consistently been an advocate for research that is developed and led by those living with the condition being studied. This patient-oriented research has allowed for those with firsthand knowledge of a chronic health issue to be part of the research process from the very beginning.

Her work in this area, much of it with the Diabetes Action Canada research network, has helped inspire others living with diabetes to become part of the research process. Witteman sees this as critical. “The reason I got involved with Diabetes Action Canada was because they needed someone who had expertise in how to involve people living with the condition in research about that condition, and I have always done that,” says Witteman. “That’s how you do things in human factors. If you develop tools for people without involving the people who are going to use them, then they’re not going to work.”

In her own life, she has been in the room when a researcher presented a new therapy or technology meant to improve the lives of those with diabetes. Often, extensive work had gone into developing this project, but it was immediately clear to Witteman that no one with diabetes had actually been involved in the process. She found this incredibly frustrating, as so much time and energy was being spent developing tools that were not appropriate for the end user – a problem that could have been solved by simply involving people with diabetes in the research process. “The lived experience of people with diabetes has historically not been well respected in research,” Witteman says.

While there have always been some researchers who included those with the condition in their work, it was a small number and even now she worries that if funders didn’t require patient involvement, many investigators would revert back to the way things were done previously. “I think it’s pretty fragile right now the way it’s set up,” she says. “It’s more work. I think it’s worth it. I think it’s very rewarding and allows for better research. But it takes more time. You have to build relationships.”

With Diabetes Action Canada, Witteman has been part of the development of a wealth of tools to help researchers better work with those living with diabetes, something she hopes will improve the process on both sides and make everyone feel more comfortable. She has also supported many patient partners who wanted to better understand how they could be involved in an effective way. If everyone understands the benefits, she believes the extra effort will be valued.

Witteman has shied away from working exclusively in diabetes, however, as she knows that living and working with a condition can be exhausting. “I spend all my life coping with it, and it already occupies a large proportion of my time and my attention,” she says. “I don’t know if it’s the same for other people, but certainly for me it is more emotional when working on a topic that intersects with my life. Working on something that has to be respected because this is my life and it affects me in a very day-to-day, impactful way. I think it’s a testament to the people that are able to do it that they are able to shoulder that emotional work.”

For those living with diabetes who have benefitted from her research and advocacy, there is much gratitude that despite that emotional toil, Witteman has continued to play an active and passionate role in fighting for research to better represent them.

Are you interested in supporting type 1 diabetes research in Canada? The Connect1d Canada Community Advisory Committee (CCAC) is looking for people from the diabetes community to be a part of the committee that supports our Connect1d Canada program.

The Private Member’s Bill put forward by Sonia Sidhu, MP, Brampton South, to establish a national framework on diabetes passed unanimously in Parliament yesterday. This is a major step forward in supporting the health of people with diabetes or at risk of type 2 diabetes across Canada.

You can read the bill here: https://parl.ca/DocumentViewer/en/43-2/bill/C-237/third-reading

Preamble: “Whereas one in four Canadians live with prediabetes or diabetes, a chronic disease that can result in life-threatening complications if not treated;

Whereas Canada, the birthplace of insulin — a hormone that has played a key role in the control of diabetes —, seeks to be a leader in promoting diabetes awareness;

Whereas diabetes awareness and education can help people identify early signs of diabetes and thus prevent or delay its onset;

Whereas federal and provincial coordination and information sharing is required to prevent and treat diabetes as well as to prevent health inequities among people suffering with this disease;

And whereas the Parliament of Canada recognizes the need to be proactive in the fight against diabetes, and the Government of Canada should develop and implement a national framework for diabetes.”

Our partners at Diabetes Canada have just announced their 2021 research competition. Learn more below.

Diabetes Canada’s 2021 research competition is now open for applicants! This year, Diabetes Canada will be awarding 15 End Diabetes:100 Awards. Each of the 15 awards commits a $100,000 operating grant annually for three years to support brilliant scientists and provide them with the freedom, autonomy, and resources to set them on the road to breakthrough discoveries.

The objective of the End Diabetes:100 Awards are:

• To support researchers in the discovery of the biomedical, clinical, health services and/or population health factors that lead to the onset and progression of all types of diabetes and related complications.
• To develop solutions aimed at the prevention, management, or cure for people living with diabetes.

There is a two-stage application and review process:

1. Applicants are invited to submit a letter of intent (LOI).
2. After panel review, selected applicants will be invited to submit a full application. Diabetes Canada intends to advance the top ranking LOIs to the application stage to ensure a funding success rate of 50%.

At this stage, we invite all interested applicants to complete and submit by email an LOI using Diabetes Canada’s letter of intent submission template. Please note all LOIs are due by June 20, 2021, 7:59 p.m. ET.

Please check the Diabetes Canada website and review the 2021 Research Competition Guide for full details on the award being offered and eligibility criteria, policies, and timelines for the 2021 competition: https://www.diabetes.ca/research/grants—awards/competition

We thank you for your interest in the Diabetes Canada research competition, and for the crucial role you play in the advancement of diabetes research. Diabetes Canada is committed to working together with talented researchers towards our common goal of creating a world free of the effects of diabetes.

By Krista Lamb

On April 14, 2021 Diabetes Action Canada partnered with the Banting & Best Diabetes Centre and the University of Toronto’s Department of Medicine to host a celebration of the 100^th anniversary of the discovery of insulin.

This event was designed entirely by a team of people living with or caring for someone with diabetes, and was an opportunity to share stories of how insulin has changed lives for the better. Each speaker was chosen because they were living with diabetes or doing work that was making a difference in the field.

More than 1,000 people registered for this virtual event, which was attended by those from around the world. They watched video presentations from people living with diabetes who shared their stories—including our youngest Patient Partner, 7-year-old Chloe Pow and her father, Conrad.

Mother daughter duo Dana and Marley Greenberg discussed their experiences living with type 1 diabetes and how the condition has changed in the almost 50 years since Dana’s diagnosis—and in the more than ten years since Marley’s.

The Diabetes Action Canada Indigenous Patient Circle was represented by Sasha Delorme and her family. Sasha told the story of her son Brayson’s diagnosis with type 1 diabetes and her own diagnosis with type 2 diabetes. And Diabetes Action Canada Patient Partner Mike Alexander shared his experience as a survivor of the Sixties Scoop. He had developed depression and battled addiction before his diagnosis with type 2 diabetes and has now transformed his life to become a successful triathelete.

Drs. Bruce Perkins and Alice Cheng shared the latest developments in insulin treatments in a panel moderated by Dr. Sarah Linklater, the Chief Scientific Officer for JDRF Canada. And Drs. Holly Witteman, Joyce Dogba and Joseph Cafazzo shared the ways that people with diabetes are being integrated into every part of the research process—and how that is improving the results.

In a special presentation, Grant Maltman, the curator at Banting House National Historic Site of Canada, discussed the importance of place in the discovery of insulin before unveiling Canada Post’s new stamp commemorating the 100th anniversary.

Jen Hanson, the Executive Director of Connected in Motion, and Oria James, the co-founder of the University of Toronto’s College Diabetes Network, presented on living and thriving with type 1 diabetes—a talk filled with resources to help those with diabetes find community and connection.

Throughout the evening, videos were shared from across Canada and around the world. Researchers, health care providers, people living with diabetes and those caring for someone with diabetes all submitted messages to commemorate this anniversary and talk about what insulin means to them.

The entire event was truly a celebration—with the chat filled with questions and comments from an international audience who were touched and inspired by the presentations.

This celebration was made possible thanks to a generous donation from Sun Life.

Videos from the event are now available for viewing on the Diabetes Action Canada website.

Watch now!

By Krista Lamb

With diabetic retinopathy currently a leading cause of blindness in working-age Canadians , the need to do more is clear. That’s why Diabetes Action Canada researchers Dr. Valeria Rac, lead for the Health Technology Assessment and Network Analytics program, and Dr. Michael Brent, lead for Diabetic Retinopathy Screening program, developed Project OPEN.

Vision loss from diabetic retinopathy is often preventable if it’s detected early, but in each of the provinces there is a significant gap in screening. In Ontario, for example, more than 450,000 people (40% of those with diabetes) had not had their eyes checked over a two-year period. According to ICES data, a large majority of those who have not received screening are from low income areas in large cities.

Project OPEN takes a population-based approach to this problem. They are using administrative health data to identify people living with diabetes who have not had an eye examination more than a year. Their goal is to identify and engage patients, improve access and awareness of screening and improve health outcomes. Patients are then directed to one of the participating community health centres to receive a screening. Funding for the project is being provided by Fighting Blindness Canada and a private donation.

“When we asked people living with diabetes what is the most important for them, it was actually eyesight. That’s where the discrepancy was between the patients and providers. Providers identified other priorities, but patients were very clear that the number one priority for them was that they have an opportunity to keep their vision,” says Rac. This helped her team understand what people with diabetes wanted and to create a program that would help to achieve it.

Project OPEN is a unique opportunity to use administrative data in a way that puts those living with diabetes at the forefront. It is, Rac explains, using data that already exists to improve clinical care. Data from ICES will be used to identify people who have not been screened. Then, using electronic medical records, individuals will be referred to the participating community health centres for an exam.

The program has a particular focus on underserved communities, such as new immigrants, asylum seekers and the uninsured, who may not realize that they are eligible to receive this service. Many, Rac explains, would not even show up in electronic medical records if it were not for the participation of the community health centres. These are often the only places vulnerable populations will seek treatment.

“I think at the root of this project is also enhancing overall awareness,” says Jim Bowen, program manager for the Health Technology Assessment and Network Analytics program within Diabetes Action Canada. “The fact that 40% of people had not been screened indicates that there’s a lack of awareness of the availability and the funding for this screening. In order to prevent blindness, we need to make sure people understand that they need to get their eyes checked on a regular basis.” Project OPEN helps increase this awareness and access.

Working with a Diabetes Action Canada Patient Partner, Debbie Sismore, who herself is blind due to diabetic retinopathy, was a huge help in developing the program. Both Debbie and her husband, Malcolm, were involved in the project from the initial conception in order to ensure input from those who are living with this particular complication. “Both Debbie and Malcolm, as an example, provided input on the interview guide that we will use to interview patients about their experience with the screening that is currently ongoing in different community health centers,” says Rac, explaining how the duo have helped to create resources that will work well not only for health care providers, but also for those living with diabetes.

The involvement of those with diabetes will continue to be a priority for the team, as they move into the next phase of this project. Rac is hoping to engage more people with diabetes from vulnerable populations to ensure the program continues to fit their needs.

Congratulations to our Aging, Community and Population Health team for the publication of their recent paper: Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program. The paper was published in the March 17, 2021 issue of the Journal of Multimorbidity and Comorbidity.

The research paper shares the five challenges the team, led by Dr. Maureen Markle-Reid, learned from working with older adult partners throughout the research process. These were:

1) actively finding patient partners who reflect the diversity of older adults with multimorbidity;

2) developing strong working relationships with patient partners;

3) providing education and support for both patient partners and researchers;

4) using flexible approaches for engaging patients, and;

5) securing adequate resources to enable meaningful engagement.

The hope is that this paper will provide guidance to researchers on how to have meaningfully engage with this vulnerable and understudied subgroup in the patient engagement literature.

Read the paper here.

By Krista Lamb

*This article originally appeared on the BBDC website.

It has been 100 years since the discovery of insulin, a seminal event in medical history that has saved the lives of millions of people around the world. It is an exceptional reason to celebrate, which is why the Banting & Best Diabetes Centre, Diabetes Action Canada, and the University of Toronto Department of Medicine have developed an event that will share not only exciting developments in Canadian research but also the experiences of those living with or working within the field of diabetes.

One of the speakers at this event, Dr. Bruce Perkins, is both a diabetes researcher and a person living with type 1 diabetes. Perkins, who is the Director of the Leadership Sinai Diabetes Centre and a Professor at the University of Toronto, will be speaking about the latest advances in diabetes treatment. It is, however, the magnitude of the discovery of insulin, a drug that keeps him alive and healthy, that is most significant to him.

“As a scientist, and a person with diabetes, it is humbling to realize what an extraordinary thing this discovery was one hundred years ago, and that we’re so fortunate to be able to celebrate it in its fullest,” he says. “The history really motivates me. It was a simple discovery with so much impact.”

Perkins will be joined on the panel by Dr. Alice Cheng, an endocrinologist at Unity Health in Toronto who is a passionate advocate for the diabetes community. She too sees this event as much more than just an opportunity to discuss diabetes treatments. “It’s exciting to learn from the past, in terms of understanding the history of the discovery, and then learn about what’s happening now and what might happen in the future,” she says. “It is a celebration of the achievement, but also meant to further Inspire everyone to continue this work so things keep getting better. It’s a very proud moment.”

In addition to this panel, which will be moderated by Dr. Sarah Linklater, Chief Scientific Officer at JDRF Canada, people living with diabetes will be front and centre to share their stories. Members of Diabetes Action Canada’s Indigenous Patient Circle will discuss the role of insulin in their lives, Jen Hanson from Connected In Motion will share ways to live an active and healthy life with type 1 diabetes, researchers from across Canada will explain how people living with diabetes have begun playing an active and vital role in their studies, and messages of celebration from around the country will be shared throughout the event.

“When we started to explore how to celebrate this milestone, we knew that people living with diabetes needed to be at the heart of it,” says Dr. Gary Lewis, Director of the BBDC and Scientific Co-Lead for Diabetes Action Canada. “We are so thrilled to have an array of speakers who will be sharing their experiences in a way that will educate and inspire. Our greatest hope is that a cure will happen within the next 100 years, but for now we want to show our appreciation for this life-saving discovery.”

Join us on April 14, 2021 from 4:30 p.m. to 8:15 p.m. ET. The event is free, but registration is required.

The full agenda is available here.

By Krista Lamb

Share in an evening of storytelling and science in honour of this life-saving discovery

On April 14, 2021 from 4:30 to 8:15 p.m. ET, the Banting & Best Diabetes Centre, Diabetes Action Canada, and the University of Toronto Department of Medicine will bring together a diverse group of speakers to share their stories about how the discovery of insulin has changed their lives for the better.

Open to everyone, this virtual event, 100 Years of Insulin: Celebrating its impact on our lives, will highlight the latest advances related to insulin, as well as the stories of those who are alive today because of this discovery.

“Toronto is understandably proud of its role in the discovery of insulin, which took place here at the University of Toronto,” says Dr. Gary Lewis, Director of the Banting & Best Diabetes Centre and Scientific Co-Lead for Diabetes Action Canada. “We are thrilled to be able to celebrate virtually with friends and colleagues from across Canada thanks to the generous support of our sponsor, Sun Life. I hope that all those who attend will leave inspired by the work being done in this country to further the legacy of Banting, Best, Collip and Macleod.”

Topics covered at the celebration will include, diabetes through an Indigenous lens, the importance of having people living with diabetes involved in the research process, new developments in diabetes treatment, and how to thrive with diabetes. In addition, Canada Post will unveil its newest commemorative stamp to mark the 100th anniversary of the discovery of insulin.

“Every day of my professional career as a diabetes specialist I am privileged to help people use insulin in the best possible way to live healthy, active lives,” says Dr. Jacqueline James, Department of Medicine Division Director, Endocrinology and Metabolism at the University of Toronto. “At this event attendees will learn about the many ways that current approaches have improved how insulin is used today, and what is hoped for the future.”

This free, public celebration has been generously supported by Sun Life. They are a leader in supporting diabetes awareness, prevention and care in Canada. Sun Life has a long history of supporting health and wellness and their commitment to improving the lives of people living with diabetes.

This event is one of many that will be held as part of the celebration of the 100th anniversary of the discovery of insulin. On April 15th and 16th the University of Toronto’s Scientific Symposium will provide comprehensive updates on the latest advances in diabetes treatment and management through a series of online educational sessions and live, online, panel discussions with the experts from around the world. In addition, numerous other partner events will take place throughout the year.

The full agenda for the public celebration is available here.

Register now to secure your place!

About Diabetes Action Canada:
Diabetes Action Canada is a Canadian research organization that was launched in 2016. It is funded jointly by the Canadian Institutes of Health Research’s (CIHR)  Strategic Patient-Oriented Research (SPOR) program, non-profit organizations, and private sponsors. The Network focuses on bringing people with diabetes, their caregivers and researchers together to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns. Diabetes Action Canada partners and collaborate with university research teams across Canada, non-profit organizations, and provincial governments to plan, execute and evaluate these research projects so we can improve patient outcomes and experiences.

About the Banting & Best Diabetes Centre:
The Banting & Best Diabetes Centre (BBDC) was established in 1978 as an extra-departmental unit of the Faculty of Medicine, University of Toronto with the primary objective of advancing diabetes research, education, and patient care. It now has a network of over 200 faculty and health care providers involved in diabetes research, education and care from various departments at the University of Toronto and its affiliated hospitals and research institutes. The BBDC offers several grants, studentships, fellowships, and other support for qualified individuals involved in diabetes research at the University of Toronto and its affiliated hospitals and research institutes. It also hosts scientific conferences to facilitate the exchange of scientific information and ideas, and to assist in the development of collaborative diabetes research activities both locally and internationally.  The Centre also develops continuing health education and quality improvement initiatives for all members of the diabetes health care team.

About the University of Toronto Department of Medicine:
The Department of Medicine at the University of Toronto is one of the oldest departments of its kind in North America, dating back to the founding of the School of Medicine in 1843. A major milestone in the department’s history was the establishment of the Sir John and Lady Eaton Professorship of Medicine in 1919; the first endowed chair in clinical medicine in what was then the British Empire. Now, the Department of Medicine is one of the largest in North America, with 800 full-time faculty members, 1,000 postgraduate trainees, and 20 sub-specialty divisions. One third of Canada’s, and one half of Ontario’s, internal medicine specialists received their training here. The Department of Medicine is also a research powerhouse with $162+ million annual research funding. Our research generates new knowledge with the goal of meaningfully impacting internal medicine training and the care and health outcomes of patients and their families.

Congratulations to our Health Technology Assessment and Network Analytics team, who collaborated on a recent research protocol: Impact of Intersecting Systems of Oppression on Diabetic Retinopathy Screening Among Those Who Identify as Women of Low Socioeconomic Status: Protocol for a Convergent Mixed Methods Study.

The protocol, whose lead author is Dr. Aleksandra Stanimirovic, was published in JMIR Research Protocols. It outlines the process that will be used to explore gender disparity in the provision of tele-retina program services for diabetic retinopathy screening in a cohort of women of low socioeconomic status (SES) receiving services in South Riverdale Community Health Centre (SRCHC) between 2014 and 2019.

This study is the first Ontario study to focus on diabetic retinopathy screening practices in women of low SES, with the aim to improve their health outcomes and revolutionize access to quality care.

Learn more and read the protocol here.

We’re pleased to announce the launch of Connect1d Canada, a patient-driven digital platform that allows those with type 1 diabetes (T1D) to easily learn about innovative treatments from across Canada, while contributing to research in the areas that matter most to them. Connect1d also allows researchers to easily engage people living with T1D from across Canada, enabling rapid recruitment of diverse patients into research studies.

The platform addresses some of the major barriers, including awareness and understanding of available research projects, that exist in T1D research. By providing this direct link between people living with the condition and researchers focused in this area, more people living with T1D become aware of opportunities, and research teams have a more diverse pool of candidates to work with.

Connect1d Canada was co-designed by people living with T1D and researchers, ensuring that the needs and wants of both groups were incorporated. It is an opt-in registry, which means that any Canadian adult with T1D can choose to share their information with research teams. Those participating control how their information is shared and with whom.

Visit the Connect1d Canada website.
Listen to the Actions on Diabetes podcast episode about this topic.
Watch our recent webinar on the project.

By Krista Lamb

This month, the Indigenous Youth Mentorship Program (IYMP) was named one of eleven programs in the Healthy Futures Initiative by LEAP | Pecaut Centre for Social Impact’s Health Futures Accelerator.

With support from the Public Health Agency of Canada, LEAP is providing in-depth strategic and operational support, coaching, capacity building and funding to the selected social ventures. The goal of this support is for recipient programs to scale and increase their combined impact to reach even more Canadians over the next five years.

IYMP is a relationship-based, mentor-led healthy living afterschool program delivered by Indigenous adolescents for children in their community. This investment from LEAP will allow the IYMP team to enhance its programming in the existing 50 communities where it currently operates, and expand to more than 100 plus communities in the next five years.

The funding will make a meaningful difference in the lives of participants, bringing needed resources to continue to grow a program aimed at providing tailored health strategies to individual communities.

“We’ve reframed diabetes prevention in a culturally-safe framework and we focus on resilience,” says Dr. Jonathan McGavock, a Settler scientist from the University of Manitoba, an investigator at the Children’s Hospital Research Institute of Manitoba, and Diabetes Action Canada researcher, who is helping support the research arm of IYMP. “By engaging Indigenous youth from their community in adapting and delivering the program, they can tailor it in the ways that work best. This peer mentoring, culturally-safe program overcomes the Westernized individualized approach.”

Since its inception, IYMP has received support from Diabetes Action Canada and other funding organizations, which allowed the team to slowly build capacity and prove that their success could translate to a larger number of communities. This additional funding from LEAP will provide even more opportunities for growth and will allow IYMP to move from a research home to a community-based organization called Ever Active Schools. It will also allow for important messaging about diabetes to take hold in the minds of youth who may be at risk.

“We tend to blame diabetes on people. You haven’t done this, you haven’t done that,” says McGavock. “We take that out of it. We’re really trying to rethink this so that it can be something that’s sustained in the long term, but also is culturally safe and grounded in the teachings and Indigenous knowledge that communities have had for millennia.”

While COVID has caused the program to pivot this year, McGavock has been inspired by the ingenuity that the young adults running the program have shown in adapting. They have offered outdoor lunch programs, virtual programming and other solutions that help meet youth where they are at, including adjusting programming times to reflect new online school schedules.

The face-to-face training sessions and large team gatherings that have been a highlight of the program in past years, bringing together youth from across Canada to connect, share and learn from each other, have had to be temporarily halted. McGavock and the IYMP team across Canada are eager to get back to doing that work, but also excited to see that even without those opportunities to bond, the program is thriving.

“We can’t travel to communities; they can’t travel to see us. So that’s going to be a challenge,” says McGavock. “But we want to connect more deeply with communities, through web platforms, through storytelling. This past spring, we did two months of fireside chats with Elders and reflections from the community on what IYMP means to them. We’ve really tried to connect ourselves more deeply as a group, and see if we can broaden it more widely, or more deeply within the community and reach more kids.”

Learn more about the Indigenous Youth Mentorship Program.

Learn more about LEAP Pecaut Centre for Social Change.

Congratulations to the University of Toronto’s Family Medicine Department on the launch of their 2020 University of Toronto Family Medicine Report: Caring for Our Diverse Populations.

The report illustrates the critical role of family doctors in caring and advocating for the communities they serve.

You can learn more about the report and read it on the U of T website.

Two years ago, the SGBA+ team at Women’s College Research Institute (WCRI) launched The Health Researcher’s Toolkit, a series of seven interactive e-learning modules focused on the integration of sex and gender in health research. The modules are designed to benefit both experienced and emerging researchers across a range of disciplines, from medical sciences to social sciences and everything in between.

This week the team launched a new eighth module, Intersectionality as a Research Lens: A Pathway to Better Science, which explores what intersectionality means, how it shapes a person’s lived identity and why it’s relevant.

We know health research that includes an intersectional lens is more scientifically rigorous and responsive to the diverse health needs of people in Ontario, across Canada and around the world. Similarly, intersectionality can advance equity because it helps us understand how a person’s multiple identity factors can lead to discrimination or privilege. As such, intersectionality plays a dual role in shaping health outcomes as well as an individual’s lived experience.

This new module is an important tool to help public health practitioners and health researchers better understand and apply an intersectionality lens to their projects, proposals, and studies.

Just in time for World Diabetes Day on November 14, two of Diabetes Action Canada’s programs have been highlighted in a Globe and Mail supplement.

The article, Unleashing the power of data to enhance health outcomes for Canadians with diabetes, features the National Diabetes Repository and Connect1d programs. It is available online now.

Read the article!

Recently, our Knowledge Translation research group, led by Dr. Sophie Desroches, published a paper on their environmental scan of knowledge translation tools in the Canadian Journal of Diabetes.

The paper, Environmental Scan on Canadian Interactive Knowledge Translation Tools to Prevent Diabetes Complications in Patients with Diabetes, identifies existing interactive knowledge translation tools that could help patients and health care professionals prevent diabetes complications in the Canadian context. The team conducted an environmental scan in collaboration with researchers and four patient partners across Canada.

They looked at tools used to prevent diabetes complications that met the following criteria: they were used in a real-life setting; used any instructional method or material; had relevance in the Canadian context, were written in English or French; has been developed and/or published by experts in diabetes complications or by a recognized organization; were created in 2013 or after; and had accessibility online or on paper.

The results of this study inform Canadian stakeholders interested in the prevention of diabetes complications to avoid unnecessary duplication, identify gaps in knowledge and support implementation of these tools in clinical and patients’ decision-making.

Read the paper here.

By Krista Lamb

If patient involvement in designing research studies is to become an integrated part of the diabetes research process, the next generation of scientists must understand why it is necessary and how to successfully incorporate patients into their work.

To achieve this, Diabetes Action Canada’s Training and Mentorship team has been working to build resources and share knowledge in both official languages with students and trainees across the country.

Dr. André Carpentier is one of the program leads, alongside Michelle Murray, Dr. Mathieu Bélanger and Patient Partner André Gaudreau. For Carpentier, this project is essential to establishing a process for incorporating patients into research planning. He sees this as a way to further democratize research, opening it up to everyone who has a stake in the results. To do this, the team needed to ensure everyone was starting from a place of common understanding. “Because such a program did not exist before, we had to train the trainers and train all the different patient partners and the investigators at Diabetes Action Canada, then move on to expand the training base to others as well,” he says.

Gaudreau, who lives with type 2 diabetes, got involved because he wanted the opportunity to help researchers see that patients brought a very specific and needed expertise to the table. He had met investigators who did not see why a patient partner needed a role in their studies, then after attending one of his training sessions they realized the value they were missing out on. “They would come up to me and say, “Oh, André, I know why now.” After the training, they see why it’s important to start with the patient partner at the beginning, not at the end or the middle,” Gaudreau says. “Start with patient partners and ask them what the research could do for them.”

Carpentier is particularly proud of how patient partners like Gaudreau have been integrated so fully into the process—from the administrative level, to the planning and evaluations, as well as through doing the training sessions themselves. “We have incredible patients that are really engaged throughout all of the process and all the programs, and that has helped us move the needle even further than what we anticipated,” he says.

One example of this is a recent project with the Diabetes Action Canada Indigenous Peoples Health Program, in collaboration with the Can-SOLVE CDK SPOR Network. The groups hosted the inaugural Wabishki Bizhiko Skaanj (wah-bish-kih biish-ih-goo skaa-nch) learning pathway in April 2019 in Winnipeg, Manitoba.  The pathway aims to enhance researchers’ and Patient Partners’ knowledge and awareness of histories of Indigenous peoples in Canada and the impact of colonization and racial biases on Indigenous health.  It introduces culturally safe patient-oriented research practices with Indigenous communities as partners and helps foster a climate where the unique history of Indigenous peoples is recognized and respected in order to conduct research in an equitable and safe way. This process also involves developing an ongoing personal practice of critical self-reflection, and being honest about one’s own power and privilege, especially as these relate to Indigenous people.

Moving forward, Carpentier is hopeful they can secure more partnerships and involve more research institutes—bringing trainings like this to a larger and more diverse audience. He would also like to see continued investment in mentorship programs to help expand the number of young scientists who can be immersed in this work and see the tangible impacts.

Gaudreau is also very interested in expanding the reach of this knowledge sharing. In future, he would like to focus on doing more train the trainer sessions in French or other languages. While many of the current trainings take place in French, he would like to see this increase as a way to ensure that there are trained instructors available across the country who are able to reach a large and diverse population.

Overall, the group hopes to build on their successes to increase the understanding of how patient involvement in research can have a positive impact on research at all levels.

Learn more about the Diabetes Action Canada Training and Mentoring Program.

By Krista Lamb

For decades, sex and gender were often missing from the list of things considered during the research process. Unfortunately, this led to some health care interventions that were inappropriate or potentially harmful for some patients.

These days, sex and gender are recognized as important to health research—a development applauded by Diabetes Action Canada—and our research team in this area is looking to ensure that understanding of sex and gender is broadened to include considerations of intersectionality, encompassed by the term sex- and gender-based analysis plus (SGBA+).

The sex and gender research team at Women’s College Hospital in Toronto defines SGBA+ as “the process of integrating sex, gender and other demographic factors – such as race and disability – throughout the research process, from conceptualizing (e.g. research question development) through to completion (e.g. knowledge translation).”

This means that while it is important to look at the distinction, for example, between women and men, there is also a need to look at other factors in their lives and how these affect outcomes in health research.

“I think at the start, it was realizing the importance of looking at differences between women and men,” says Dr. Paula Rochon of this area of research. “We know that there are so many important differences from a sex perspective, in terms of, for example, who is predisposed to getting diabetes. Then there are many gender-related pieces, everything from how it impacts diet or body image, to the design of insulin pumps. Over time, we’ve added on all of the other intersecting factors that are so important. How does socioeconomic status play into it? How does race play into it? What are all these other pieces? It just adds so much more complexity and richness to the work.”

Dr. Robin Mason agrees. “All these elements contribute to identity, making each person’s experience in developing diabetes, learning to live with diabetes, self-management and the overall impacts of diabetes, somewhat unique,” she explains.

In other words, we can say that a woman may be more or less likely to develop diabetes based solely on the genetic variations that stem from her sex. However, there are many other variables in her life that may also play into that risk—where she lives, her race, her socioeconomic status, what she does for a living, what resources she has access to and so on—and these too must be considered in a research study in order to get a full understanding of the results.

This leads into the concept of intersectionality, which is another major tenant of this work.

“Intersectionality is a framework to understand how different demographic factors, like sex, age, race, religion and education, intersect to determine health outcomes. As such, it’s important to apply an intersectionality lens throughout the research process from the onset of the project until completion to ensure all identity factors are accounted for,” explains Jaimie Roebuck.

Looking at sex and gender exclusively, explains Mason, helped the team at Women’s College Hospital recognize the limitations of these elements when considered on their own. They also needed to look at intersecting identity-related factors.  “We recognized that we needed to do some further work in developing our understanding of how these key identity-related factors intersect with sex and gender to create individualized experience.”

To further this goal, the team has developed an article that explains the concepts of SGBT+ and intersectionality, and they are working on a number of training modules that they will roll out for Diabetes Action Canada researchers over the next few months.

For Dr. Rochon, working with the Diabetes Action Canada Network is helping to build understanding of these concepts into research in order to better serve those living with diabetes. “Through our group, we’re helping to increase capacity and advance the future of diabetes research in Canada,” she says. “If all researchers start applying an intersectionality lens to their work, we can create a body of evidence that people can use to help really improve the way we care for those with diabetes.”

Learn more about our Sex and Gender research program.

Diabetes Action Canada is excited to continue it’s webinar series in October with our research spotlight featuring our Knowledge Translation program. Please note that all presentations will occur in French

Below you will see the list of topics and presentations for this October webinar series:

Tuesday October 6^th at 1PM EST

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Personal Impact Story: Lanie Deslauriers

• ScaLing up sharEd decision makinG for pAtient-centred Care (LEGACy) in home care
  • Presented by: Karine Plourde

Canadian seniors/caregivers in home care could benefit from shared decision making and become fully engaged as partners in their care.  Although excellent tools for shared decision making have been developed the challenge is scaling these tools for wider use.  Dr. France Legare, co-lead for the Diabetes Action Canada Knowledge Translation Enabling Program discusses her CIHR Foundation Scheme Grant to scale shared decision making in home care.  

• Development of standards for a reporting guideline for studies assessing the impact of scaling up strategies – SUCCEED
  • Presented by: Amédé Gogovor

Scaling successful health interventions has no defined process, leaving many interested in scaling their intervention with little to no guidance.  Amédé Gogovor, discusses an approach to reporting scaling studies using a patient-oriented and sex and gender lens.

• Integration of notions of sex and gender in interventions aimed at promoting the adoption of shared decision-making by health professionals: secondary analysis of a Cochrane systematic review
  • Presented by: Lionel Adisso

Shared decision making has been proven favourable to patients and healthcare teams.  Integrating sex and gender considerations have also had proven benefit in treatment plan for diabetes, but how often are the two combined?  Lionel Adisso, shares his results from evaluating these two concepts together.

*Moderated by: Olivia Drescher

Wednesday October 21^th at 11AM EST

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Personal Impact Story: Nicole Ruel

• Sleeping habits among adults living with diabetes: Understanding to develop better interventions to prevent complications associated with diabetes
  • Presented by: Lydi-Anne Vézina-Im

 What is the secret to a good night’s sleep for those living with diabetes? Lydi-Anne Vezina-Im, Diabetes Action Canada Knowledge Translation Awardee, will share her findings on what people living with type 1 and type 2 diabetes believe is their secret to a successful snooze.

• Research on Patient-Oriented Scaling Up (RePOS)
  • Presented by: Ali Ben Charif

As researchers gather evidence of successful research initiative at the local scale there is increased interest in scaling these innovation to reach more region in Canada and increasing access to more people. Dr. Ali Ben Charif, discusses a multi-stakeholder approach including, Patient Partners, to create a framework for patient and public involvement in scaling-up health research innovations.

 Scaling-up Potential for Health Innovations: Status in Canada

• • Presented by: Ali Ben Charif

Canadian researchers gather evidence through countless pilot projects, but how to researchers scale their ideas to more places in the country? Dr. Ali Ben Charif, discusses the current state and process for scaling health research innovations and key success factors.

 *Moderated by: France Legare

By Krista Lamb

For older Canadians, diabetes is often one of multiple conditions they are trying to manage—all while encountering barriers that are specific to their age. This is why a research team at Diabetes Action Canada is dedicated to working together with older adults with multiple chronic conditions and their caregivers to promote optimal aging at home.

This Diabetes Community Partnership Program (CPP), developed  by the Aging, Community and Health Research Unit at the School of Nursing, McMaster University in Hamilton, ON involves a six-month self-management intervention that is designed to improve the quality of care and health outcomes in adults over 65 with diabetes and other chronic conditions who are living in the community. The Diabetes CPP is delivered through a partnership between primary care and community partner organizations and consists of care coordination, home or virtual visits, wellness sessions, and team case conferencing in addition to usual diabetes care. The Diabetes CPP is currently being evaluated in six diverse settings across three provinces (Ontario, Quebec, PEI).

For Dr. Jenny Ploeg, the need to focus on an older adult population is key. “We fully recognize the vulnerability of older adults in terms of their multiple chronic conditions,” she says. “They’re high users of the health system, their quality of life is often affected by the presence of chronic conditions. And also, they’re heavily reliant on their family caregivers for support.”

Dr. Maureen Markle-Reid agrees. “This is a population that is underserved, in that they face a lot of inequities and have difficulty, for example, accessing services, and are often difficult to reach because they have low income or they have low social support. There’s lots of factors that influence their health outside of the health care system,” she says. “And a large piece of this puzzle is the fact that they’re under studied. When we started this project, we found that a lot of the research looking at different models of community-based care had actually excluded older adults who had multiple chronic conditions.”

Older adults with diabetes and other chronic conditions often receive care from multiple providers who do not communicate directly with each other. This can mean their care is fragmented. The CPP was designed to improve communication and coordination across providers, settings and sectors so that older adults and their caregivers can feel better supported and improve health outcomes.

The team are also studying the barriers and facilitators to implementing the CPP in specific communities so that the program can be tailored appropriately. They recognize that elements like geography and individual cultural safety should be considered when implementing the program in diverse settings. For example, in a community like the suburb of Scarborough, ON, older adults may struggle to find transportation to get to the grocery store and purchase healthy groceries, or to find resources available in their native language. When considering these factors, what may work well in one population may be completely wrong for another. Being aware of this allows for a much more holistic and evidence-based approach.

For the Patient Partners involved in this project, much of the appeal of this project was in better understanding the needs of older adults from diverse backgrounds and, therefore, being able to provide programming and support that would improve their lives.

Frank Tang experienced many of the barriers the program has observed when he was caring for his aging parents, including a mother with diabetes and dementia. He had to navigate multiple doctors and specialists and translate to his parents what was needed and why. Now, as he grows older and manages his own diagnosis of type 2 diabetes, he is very aware of the need for research to focus on meeting the specific needs of communities. “I think that what I bring to this project is the lived experience, especially when language is a major factor,” says Tang. “As people get older, their hearing is not as good. And you get a specialist that talks quickly to them and they don’t have a clue what the details are. You need someone who has some good comprehension of the English language or the French language who could help them break it down in a way that they can understand.”

Patient Research Partner Ron Beleno agrees. He is also helping his parents manage diabetes and other chronic conditions. He sees clearly the challenges of having older adults from an immigrant population trying to navigate the health care system, and the need for research programs to study their needs and create programs that meet them. “This is about understanding that community piece and being willing to adapt,” he says. Researchers have been learning from the Patient Partners about the very different concerns faced by each individual and how research must meet the needs of everyone. “You have to have some flexibility based on the community.”

Moving forward, the program aims to continue to focus on collaboration with Patient Research Partners and community resources to improve on outcomes. “I’m so proud of the changes that we’ve seen as we move forward with this study,” says Markle-Reid. “We often say that we were changing practice as we study it. And we’re seeing changes in terms of how providers are caring for older adults with multimorbidity, how they’re paying attention to the social determinants of health, how they’re now working with a patient-centered lens, working collaboratively with patients and families, including family caregivers or friends, and really bringing those people in as part of their care.”

Learn more about the program on our website.

A paper from Diabetes Action Canada researchers Drs. Peter Senior, Bruce Perkins and Remi Rabasa-Lhoret, along with Patient Partner Kate Farnsworth, was recently released in the journal Springer Nature.

The paper, Assessment of Risks and Benefits of Beta Cell Replacement Versus Automated Insulin Delivery Systems for Type 1 Diabetes, looks in detail at these treatment options.

Read the paper here.

Diabetes Action Canada is thrilled to restart its highly successful webinar series this September, October and November.   Each month we will be featuring a different research programs and this September we will highlight the Training and Mentoring Program and the work of our awardees and trainees.

Below you will see the list of topics and presentations for this September seminar series:

Tuesday September 15^th at 1PM EST

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Personal Impact Story: Tom Weisz

1. Implementation of the Indigenous Youth Mentorship Program
   • Presented by: Frances Sobierajski

The Indigenous Youth Mentorship Program (IYMP) is designed in partnership with Indigenous communities to promote holistic wellness, prevent type 2 diabetes, and promote positive mental health. Frances Sobierajski, will discuss this dynamic after school program and the critical community engagement used to implement this successful program.

2. Exploring the feasibility of a mobile health application for management and follow up of women with Gestational Diabetes Mellitus
   • Presented by: Bhavadharini Balaji

Women who develop gestational diabetes have increased needs from the health system need increased monitoring by both their practitioner and self.  Learn how Dr. Bhavadha Balaji, Diabetes Action Canada, post doctoral fellowship awardee, is evaluating the feasibility of the bant app to support self-management for women with gestational diabetes in pregnancy and postpartum.

3. How knowledge exchange of primary care research can benefit diabetes individuals: a qualitative study
   • Presented by: Francesca Brundisini

Research findings in diabetes care often suggest different approaches to managing the condition, but how is this information communicated among those who would use it (i.e. both practitioner and citizen)? Francesca Brundisini, examines a patient-oriented approach to disseminating new knowledge to the general public.

*Moderated by: Tracy McQuire

Wednesday September 30^th at 11AM EST

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Personal Impact Story: Sasha Delorme

1. Keep it Going! Sustaining and spreading quality improvement interventions
   • Presented by: Celia Laur

Quality improvement programs have time and time again generated evidence for better care for those living with diabetes, but what happens when the funding stops? Dr. Celia Laur, Diabetes Action Canada Intercentre Trainee awardee, will share her findings of interviews with authors of trials with successful quality improvement initiatives to explore what happened when funding ended, and if/how the work continued.

1. How sugar affects fat in the blood and risk of heart disease
   • Presented by: Priska Stahel

Developing heart disease is a major concern for those living with type 2 diabetes.  Priska Stahel, Diabetes Action Canada post doctoral fellowship awardee discusses the role of glucose in releasing stored fats and increases the risk of developing heart disease. 

3. Quantifying type 2 diabetes risk in pregnant women
   • Presented by: Stephanie Read

Gestational diabetes is an important marker for future risk of developing type 2 diabetes in women. Dr. Stephanie Read, Diabetes Action Canada postdoctoral fellowship awardee, will discuss a digital tool to help women and physicians calculate individual risk of developing type 2 diabetes so that health care interventions aimed at reducing type 2 diabetes risk can be deployed at the right time for the right individuals.

4. Insights into impact of Tele-retina screening for diabetic retinopathy among those who identify as women of low socio-economic status (SES) Multimethod qualitative study
   • Presented by: Aleksandra Stanimirovic

Tele-retinal screening for diabetic retinopathy has proven to be a cost effective approach to preventing this much feared complication for those living with diabetes.  Dr. Aleksandra Stanimirovic, Diabetes Action Canada Mentorship awardee, discusses the particular challenges faced by women of lower socioeconomic status in participating in tele-retinopathy screening.

*Moderated by: Tracy McQuire

To explore ways in which data can remain safe while also becoming more easily accessible to researchers who examine issues of public interest, Diabetes Action Canada and the Schwartz Reisman Institute for Technology and Society at the University of Toronto teamed up in late 2019 to host a collaborative, cross-disciplinary workshop. The event helped to uncover insights about how health data could be liberated from the outdated mechanisms that ostensibly protect privacy, but instead act as obstacles to improved health outcomes for patients.

Participants, including Diabetes Action Canada Patient Partners, came from a variety of policy sectors, academic disciplines, non-profit organizations, and health care institutions to bring their diverse perspectives and backgrounds to a common goal: improving the health and autonomy of those who live with diabetes in Ontario through better access to and analysis of data stored in the health system. The group aimed not only to address diabetes-specific data challenges, but to more generally think about how data liberation could improve health and save lives. 

This report, Liberating Health Data in a Digital World, summarizes the problems for which participants tried to pinpoint root causes, the diversity of approaches that were brought to bear on those problems, and the unique perspectives and backgrounds of participants from a variety of sectors.

Read the report now! 

By Krista Lamb

Thanks to the work of Diabetes Action Canada researchers Dr. Alanna Weisman and Dr. Gillian Booth, it is now possible to distinguish type 1 diabetes from type 2 diabetes in Ontario’s electronic medical records and administrative databases.

This is an important step forward, as for years Ontario researchers had to take a ‘best guess’ approach to establishing the needs of people with type 1 diabetes in the province. “We’ll be able to learn a lot about type 1 diabetes in Canada, which we previously hadn’t been able to study,” says Weisman. “We didn’t even know basic things about type 1 diabetes, like how many people have a diagnosis of type 1 diabetes, are the rates increasing over time, decreasing over time, or are they stable?”

Having access to this type of data will allow researchers and policymakers to better understand the needs of those with type 1 and find ways to improve care.

Weisman, an endocrinologist at Mount Sinai Hospital, has focused her research on databases. She uses national and provincial sources to capture the health information of a population. Because type 1 diabetes is relatively rare compared to type 2—only about 5-10% of those with diabetes have type 1—it was challenging to find a way to extract information specific to the type 1 community.

“It’s important to understand that when we use these types of large databases that capture health information for a population, we don’t have the same level of detail available in the medical chart. We don’t actually have a simple coded variable that says what type of diabetes someone has,” Weisman explains.  “If you don’t have a simple way of distinguishing that, it’s really hard to reliably identify those people who have type 1 diabetes because they’re such a small population relative to type 2 diabetes.”

The paper, “Validation of a type 1 diabetes algorithm using electronic medical records and administrative healthcare data to study the population incidence and prevalence of type 1 diabetes in Ontario, Canada,”was published in the journal BMJ Open Diabetes Research and Care. Weisman hopes that it may help researchers in other provinces find a reliable way to distinguish type 1 diabetes in their database systems. She cautions, however, that because each province has slightly different ways of collecting data, the algorithm may need to be adjusted in every case.

Next up, Weisman and her research team are working on ways to use this newfound data to learn more about how access to insulin pumps can have an impact on outcomes for those with type 1 diabetes. Across Canada, each province has different rules for pump funding, which means that outcomes could potentially differ greatly based on access.

“One of the first questions we’re looking at, since we have this opportunity for the first time to compare between provinces within Canada, is to look at whether this affects incidence of insulin pump use, and whether it affects who is able to use an insulin pump based on what funding is available in their province,” Weisman says. “It’s disheartening to think that the same individual with type 1 diabetes has access to an insulin pump in one province and not another. I think this can be used to advocate and drive change in those provinces where people don’t have that much access.”

Her findings could also influence how coverage for technologies like continuous glucose monitors, which are currently not covered in most provinces, are supported. As wearable technology improves, it will be important to know just how much impact these devices have on the overall health of those who use them in order to better understand the need for improved access and funding. This new research offers a step forward in that work.

Read the paper.

Learn about Diabetes Action Canada’s National Diabetes Repository.

By Krista Lamb

The cost of treating foot ulcers in people with diabetes continues to be incredibly high. A new study from Diabetes Action Canada researchers Drs. Mohammed Al-Omran and Charles de Mestral, shows that the cost for treatment of diabetic foot ulcers in Toronto hospitals is more than double that of the top five most costly conditions.

Part of this, the team explains, is that care for someone with a diabetic foot ulcer is fragmented. “Unfortunately, there’s no coordinated multi-disciplinary care for this existing province-wide in Ontario,” explains Al-Omran. “As a result, you expect the cost to be high, plus the care of these patients will be compromised. This is the reason we conducted this study.”

The paper, “The economic burden of inpatient diabetic foot ulcers in Toronto, Canada,” was published in the journal, Vascular, and looked at the cost of treating diabetic foot ulcers at eight Toronto hospitals. The team compared people who were admitted with diabetic foot ulcer complications against those admitted with different diabetes complications. They found that the cost for treating foot ulcers related to diabetes was almost $23,000/patient. A stroke, by comparison, costs about $10,000/patient to treat. If a patient experiencing a foot ulcer needed an amputation, the cost skyrocketed to almost $49,000.

These costs, Al-Omran explains are driven by the length of hospital stay and the rate of readmission. These are issues, he says that are made worse because of fragmented care and the lack of a clear treatment pathway.

Al-Omran and other researchers from Diabetes Action Canada have now developed a pilot program that is investigating how by streamlining care and providing a clear plan for treatment, these costs can be lowered and the patient will receive better and more consistent care. The program is currently running at St. Michael’s Hospital in Toronto with more than 100 patients registered.

The pilot, which provides a complete end-to-end plan involving a team of vascular surgeons, chiropodists, internists and others, is already starting to see promising results. Al-Omran has seen the cost of care dip substantially for those who are enrolled in the study, as the consistent and specialized care reduces the time in hospital and improves the overall results for patients.

Al-Omran and his team are doing further studies looking at the costs of diabetic foot ulcers across Canada in the hopes that this will help encourage policy makers to implement changes that will provide better results for patients, as well as reduced costs. Al-Omran also wants to see more prevention programming.

Amputation has been found to be the most feared complication of diabetes—more so than death or blindness—and after more than 20 years of working in this field Al-Omran knows that preventive care can have an enormous impact on avoiding this outcome.

“We know that 85% of people with a diabetic foot ulcer can be prevented from having amputation with very simple screening and interventions, like special foot care and footwear, frequent visits to their primary care providers, and access to a multi-disciplinary team for high-risk diabetic foot ulcers,” he says. He hopes this research will help improve access to these preventive strategies and decrease the number of foot ulcers requiring intervention or amputation.

Learn how Diabetes Action Canada is helping to prevent lower limb amputations

Read the research paper