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Author: Krista Lamb

Joint Webinar Series with Fighting Blindness Canada and Diabetes Action Canada

Join FBC and our partners at Diabetes Action Canada (DAC) this November for a series of webinars in recognition of Diabetes Awareness Month!

Each webinar is free and open to all, and will be simultaneously available in French.

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Diabetes & Vision Loss 101
Tuesday, November 3, 2020, 5 p.m. ET

Did you know that one in three Canadians live with diabetes or pre-diabetes? Diabetes can cause uncontrolled bleeding in the retina, putting people with diabetes at risk of losing their eye sight. In this webinar, Dr. Netan Choudhry will discuss how diabetes affects the eye, what you can do to take care of your eyes, and what treatments are available if your sight is affected by diabetes.

A Q&A period will be included. Please email your questions in advance to education@fightingblindness.ca

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Tele-ophthalmology program in Canada with Diabetes Action Canada
Monday, November 9, 2020, 11 a.m. ET

Dr. David Maberley, Rebecca Merritt, and Dr. Marie-Carole Boucher

Diabetic retinopathy is a complication of diabetes and accounts for 80% of diabetic-related blindness. It is the leading cause of blindness for working age Canadians.  Early detection of diabetic retinopathy by regular screening effectively avoids vision loss from diabetes as necessary treatments prevent irreversible retina damage.

Telehealth retinal screening programs are an excellent option for those living with diabetes, but not regularly seeing a specialist for their diabetes complications management.  Each province implements their telehealth retinal screening differently and in this webinar we will learn the approaches taken by Diabetes Action Canada investigators in British Columbia, Quebec, and Ontario.  Learn more about the teleheath program.

This webinar is presented by Diabetes Action Canada.

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Living Well with Diabetic Eye Disease
Tuesday, November 24, 2020, 3 p.m. ET

Managing diabetes can be challenging and complex – even more so if you are living with an eye disease. In this webinar, multi-disciplinary experts will share their perspectives on how you can live well with diabetes. Topics discussed will include practical tips for managing diabetes while living with vision loss, mental health resources and community supports, and hearing from patient partners who have lived experience of diabetes and vision loss. This webinar is presented in partnership with Diabetes Action Canada.

Panelists include: Dr. David Wong, retinal specialist; Leanne Baarda, Independent Living Skills Specialist, Vision Loss Rehabilitation Ontario; Diana Sherifali, PhD, clinical nurse specialist, Diabetes Care and Research Program, Hamilton Health Sciences; Bert Neutel, patient partner.

A Q&A period will be included. Please email your questions in advance to education@fightingblindness.ca

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Ensuring the Future of Patient-Oriented Research

Woman teaching a group

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.

Moving Beyond Just Sex and Gender

Opened blank book with female and male gender symbols, 3D renderingBy 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 October Webinar Series

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 6th 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 21th 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

Program provides relevant supports for older adults with diabetes

Members of the Aging and Diabetes Research Group

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.

New Paper Looks at Assessment of Risks and Benefits of Beta Cell Replacement Versus Automated Insulin Delivery Systems for Type 1 Diabetes

Diagram of Assessment of Risks and Benefits of Beta Cell Replacement Versus Automated Insulin Delivery Systems for Type 1 Diabetes
A figure from the publication.

 

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 September Webinar Series

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 15th 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.

  1. 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.

  1. 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 30th 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. 

  1. 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.

  1. 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

New Report: Liberating Health Data in a Digital World

LIBERATING HEALTH DATA IN A DIGITAL WORLD Cover Art

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! 

 

New algorithm will help improve health care for people with type 1 diabetes

Dr. Alanna Weisman

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.

 

The Economic Burden of Inpatient Treatment of Foot Ulcers in People with Diabetes is Unacceptable

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

Virtual Workshop – Weekly Webinar Agenda

July 15th, 2020 at 10am EST

Diabetes Action Canada Research Spotlight – National Diabetes Repository 

The National Diabetes Repository was launched only two years ago and today we are seeing an increase in researcher awareness and interest in applying this novel tool to investigating diabetes in Canada. In this session we will learn of projects lead by Diabetes Action Canada investigators, Alanna Weisman, Michelle Griever and Braden O’Neill that have successfully used the data within the repository to answer questions that are of interest to the patient communities, policy makers and researchers. 

  • The Impact of Government-Funded Insulin Pump Programs on Insulin Pump Use in Canada: A Cross-Sectional Study Using the National Diabetes Repository
    • Presented by: Alanna Wesiman
  • Trends in diabetes medication use in Canada, England, Scotland and Australia: a repeated cross-sectional analysis (2012-2017)
    • Presented by: Michelle Griever
  • Diabetes care among people with schizophrenia: a cohort study using the Diabetes Action Canada National Diabetes Repository
    • Presented by: Braden O’Neill

*Moderated by: Conrad Pow

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July 22nd, 2020 at 10am EST

Diabetes Action Canada Research Spotlight – T1D and AI in Diabetic Retinopathy Screening

Personal Impact Story: Debbie Sissmore

  • Restructuring Type 1 Diabetes and Exercise Research in the Context of Patient Engagement
    • Presented by: Nika Klaprat

Interested in type 1 diabetes and exercise? Nika Klaprat, is engaging researchers and individuals living with type 1 diabetes (patients and caregivers), to increase capacity for patient-oriented research in type 1 diabetes and exercise by determining a core set of variables to measure in all trials, identifying preferences for attributes of exercise programs, and co-designing research protocols.

  • Narrative inquiry into understanding the type 1 diabetes lived experience and its motivations in seeking diabetes health services and education in Alberta
    • Presented by: Jamie Boisvenue

For many living with type 1 diabetes insulin pumps are the chosen path for insulin replacement therapy, but is it the best for everyone? Jamie Boisvenue will describe how hearing the life stories of people living with type 1 diabetes on pump or multiple daily injections, could have an impact on diabetes health seeking behaviours in Alberta.

  • Artificial Intelligence for Diabetic Retinopathy Screening
    • Presented by: Gabriel Lepetit-Aimon & Clément Playout

Diabetic retinopathy is a complication that is of great concern for all members of the diabetes community. Investigators that are part of Diabetes Action Canada are currently working to scale and spread the tele-ophthalmology screening in Ontario, BC and Quebec, but what about the increased workload of grading these images?  Learn about this innovative approach grading retinal images for automated diabetic retinopathy diagnosis using machine learning and artificial intelligence from our trainees Gabriel Lepetit-Aimon and Clément Playout.

*Moderator: Tracy McQuire

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July 29th, 2020 at 10am EST

Diabetes Action Canada Research Spotlight – Patient Engagement and Knowledge Translation

Personal Impact Story: Sylvie Dostie

  • A patient-initiated research project to improve diabetes management and care
    • Presented by: Ruth Ndjaboue

A recent study by Diabetes Action Canada researcher and recipient of the 2019-21 postdoctoral fellowship award, Dr. Ruth Ndjaboue, focuses on the expertise of those most closely involved in the diabetes community – persons living with diabetes. Aimed at helping health professionals and those living with or affected by the disease better understand how to improve self-management and care, Ndjaboue had some surprising results to share.

  • Needs analysis and co-design of a tele-nutrition platform for the therapeutic management of patients with chronic diseases
    • Presented by: Choumous Mannobi

Since the pandemic, there is a growing interest in telehealth and an increase in political will towards digital care. Our Knowledge Translation scholar, Choumous Mannoubi is working to developing a tele-nutrition platform to optimize remote therapeutic management for those living with chronic disease.

  • APPLICATION OF KNOWLEDGE FOCUSED ON SEX AND GENDER OF PEOPLE IN FRENCH-LANGUAGE CONTEXT: Co-creation of continuing professional development training for people experiencing diabetes and depression
    • Presented by: Alexe Deom Tardif

Those living with diabetes have told us that mental health is an area of concern. Master’s student, Alexe Deom Tardif will discuss the training of healthcare professionals in diabetes and depression with a particular focus on sex and gender.

*Moderator: Olivia Drescher

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Diabetes Action Canada Presents…2020 Virtual Workshop

This is a friendly reminder that on Wednesday July 8th at 10AM Diabetes Action Canada is holding it’s first of a series of webinars as part our 2020 virtual workshop.  We are excited to hear about some important progress in patient engagement as we discuss the following research projects:

  • Strengthening the Collaborations Between Patient Research Partners and Researchers
    • Presented by: Sasha Delorme on behalf of the Collective Patient Circle
  • A Digital Platform to Accelerate Research and Build Community
    • Presented by Shivani Goyal
  • Answering questions that matter to people living with diabetes using the Canadian National Diabetes Repository
    • Presented by: Holly Witteman and Dana Greenberg
  • Engaging Patient and Public Research Partners in the Aging, Community & Health Research Unit (ACHRU) Community Partnership Program for Diabetes Self-Management for Older Adults – Canada.
    • Presented by: Ron Beleno and Rebecca Ganann
  • Barriers and enablers to attending diabetic retinopathy screening experienced by immigrants to Canada from multiple cultural and linguistic minority groups
    • Presented by: Joyce Dogba

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Weekly Webinars: Diabetes Action Canada in action! 

Highlighting the exciting research of our trainees and investigators supported by Diabetes Action Canada

    • Each webinar will start with personal impact stories from our Patient Partners
    • Each webinar will feature four presentations (15 minutes each) from our trainees and researchers
    • Specific presentation and registration information will be sent out first week in July
    • Session will have option for simultaneous translation
    • Webinars will be July 15th, 22nd and 29th at 10AM EST – SAVE THE DATE!

Diabetes and exercise research – What matters to people with diabetes?

Nika Klaprat and Jon McGavock

Exercise is important for people living with type 1 diabetes (T1D), yet only one-third of people with T1D meet the minimum recommendations for regular exercise to achieve health benefits. A research team led by Diabetes Action Canada researcher Dr. Jon McGavock and his trainee Nika Klaprat, wanted to learn what patient-engagement practices had been used in exercise-based randomized trials in type 1 diabetes, and if they aligned with what T1D stakeholders considered the top 10 priorities for exercise research.

The team first looked at all the relevant research on T1D and exercise that met their criteria and determined that patient engagement methods have not been historically used to inform exercise-based interventions. After learning this, they developed a national survey, a steering committee and a one-day workshop to focus on having a diverse group of stakeholders in the T1D community (patients, caregivers, and healthcare providers from a wide range of backgrounds) identify their priority research questions about exercise and health. These findings provide a patient-centred rationale for designing future randomized trials of exercise interventions that have meaning for those living with T1D.

Their paper, Filling gaps in type 1 diabetes and exercise research: A scoping review and priority-setting project, was recently published in the journal BMJ Open Diabetes Research & Care. The paper is open access and available to all.

COVID-19 and Diabetes – Patient Partners Open Forum FAQ

Coronavirus cells

COVID-19 has been on top of mind for nearly everyone across the globe. With many reading daily reports on the spread of the virus and the potential impact on those with compromised immune systems, we decided to reach out to our Patient Partners to respond to their questions and concerns regarding your own risks as someone living with diabetes and with other chronic diseases.

During four video teleconferences between April 8th – April 15th, 2020 our Patient Partners had an opportunity to connect with leading experts in Canada in diabetes research discussing both type 1 and type 2 diabetes in both French and English. From these discussions we have compiled the following frequently asked questions (FAQs) to make available to all members of our research Network.  The information provided reflects what we know now about the novel coronavirus, we expect that with new information emerging there will be additional questions and we will endeavour to add and update the information provided as it becomes available.

Also, for your reference we have put together a COVID-19 resource page with information from our partners discussing diabetes and COVID-19.

 

Why are we required to stay at home?

Although we are still learning about the novel coronavirus we do know the virus is primarily spread by person to person contact. Transmission is through droplet spread from infected individuals coming into contact with the mucous membranes of the nose, mouth, throat and eyes of others. These droplets can be produced when someone coughs, sneezes, speaks, and breathes. If you pass through an area where droplets have been created (less that 6 feet from the person spreading the droplets), you could get infected. Crowded rooms with poor circulation increase the chance of getting infected.

Non-essential workers have been asked to stay at home, because you cannot catch the virus unless you are exposed to someone who is infected with the virus. These droplets can settle on objects, so if you do need to leave your home carry sanitizer with you and use it after touching objects, wash your hands with soap for 20 seconds immediately upon returning and take care NOT to touch your face. When you are out, stay at least 6 feet away from people. Some people do take the extra measure of washing the food products they purchase and disinfecting the surface of packages they receive. Although, the probability of getting infected by touching foods is low, one may wish to do so if you would like to be extra cautious.

Is it more dangerous for me as someone living with diabetes to leave my home?

A major risk factor for poor outcomes with COVID-19 is age (over age 70 and to some extent over age 60). Other risk factors, not for catching the virus but for doing poorly if you get infected, may include diabetes, but quite clearly centre on heart disease, kidney disease, high blood pressure and a suppressed immune system, for example from immunosuppressant medication.

Although health authorities have emphasized the risk of poor outcomes among people with diabetes who develop COVID-19,  having diabetes does not necessarily mean you are more susceptible to infection from the coronavirus or poor outcomes. There are theories that individuals living with diabetes are at a greater risk of any viral infection, not just the coronavirus, with increased or highly variable blood sugar levels, but this is not confirmed. Secondly, emerging data about the coronavirus has shown that diabetes alone does not seem to increase the risk of poor outcomes among those with COVID-19, but diabetes in combination with the other conditions (such as advanced heart disease or kidney disease) can impact health outcomes. Current data tells us that those with diabetes without these other complications have the same degree of poor outcomes as those without diabetes.

Is there any data suggesting that those living with T1D vs T2D have a different response to the virus?

We are still learning about this virus, but there is currently no definitive evidence that those living with type 1 vs type 2 diabetes respond differently if infected with COVID-19.  Generally, people with type 1 diabetes are younger so may fair better whereas those living with type 2 diabetes, who are generally older and may have other conditions impacting their ability to fight the infection.  People with pre-existing conditions, like heart disease, lung disease and kidney disease have a harder time recovering from the illness. The association of diabetes and bad outcomes with COVID-19 may be more about having diabetes plus other conditions and not about just having diabetes, but we are still learning about this illness.

Why is there the need to quarantine for 14 days if you have been travelling or exposed to someone who has been diagnosed as having COVID-19?

The coronavirus can jump easily from person to person. We have learned that a quarter of people (and perhaps more) who carry the virus show no symptoms – often younger people. For the virus to no longer be infectious in individuals who are ‘silent carriers’ can take up to 14 days and in rare cases even longer. Although these individuals display no symptoms, they can infect others who may develop symptomatic infection.

Individuals who have been infected by the virus usually show symptoms in 3 to 5 days, but in some it can take up to 14 days to display symptoms.  During the time between infection and symptoms emerging, individuals can spread the virus to others.  By staying away from others we are fulfilling our civic duty not to overload the healthcare system and infect hospital and essential workers.  Since you can never be sure about how others are practicing social distancing and/or isolation, it is highly recommended not to interact with anyone face-to-face as they may have likely been interacting with others when shopping, or leaving the house.

As an essential worker living with diabetes and caring for others with vulnerable conditions, am I putting my family at risk?

If your work place has installed the proper safe guards and you have access to personal protective equipment, sanitizer and areas to regularly wash your hands you should be protected. If your diabetes is in good control, you are healthy and below the age of 70, public health guidelines say it is safe to work. Older individuals (>70 years old) with diabetes and other illnesses should be more cautious and remain isolated with their immediate family members for now. These individuals are at higher risk of poor outcomes from the virus and it is best to stay at home.

Should I wear a mask when I leave the house?

It is recommended by public health officials to wear a face covering when you leave your home and when social distancing is a challenge. Face coverings, with the exception of certified N95 masks, will not stop you from breathing in the virus if it is airborne, what it will do will keep droplets that you may create from becoming airborne, therefore protecting others from you.  This means that if you are a carrier of the virus, and you are unaware of the infection, a face covering will protect others from you. For face coverings to be truly effective they must be worn properly, washed after each use (if reusable) and face touching should be avoided.  A risk to using face coverings is it may give the wearer a false sense of security and regular social distancing measures may not be taken. Meticulous hand hygiene is still the best defense against contracting COVID-19.

If I prick my finger to take my blood sugar, will the microabrasions on my fingers increase my chances of contracting the virus?

The novel coronavirus is a respiratory virus that latches onto mucous membranes as its route of entry into the body and not, micro skin abrasions. Don’t lick your finger after a finger prick.

Why are we not testing everyone for a COVID-19 infection if so many don’t exhibit symptoms?

At this time, our healthcare system does not have the capacity to test everyone for the novel coronavirus.  It is hard to prepare for a pandemic when there is no immediate threat as governments and societies have to decide where to allocate resources.   Before December 2019, there was no immediate threat worldwide of this or any other virus becoming such an issue, therefore stockpiling health resources was not considered necessary.  In retrospect this was a mistake that has cost lives and will hopefully not be repeated. Countries are more prepared for military catastrophes than they are for health catastrophes, as there is more ability to predict these threats. Post-pandemic this will hopefully change.

If so many people carry the virus, but have no symptoms what about testing for immunity or antibodies for the virus?

When you get tested for COVID-19, it is a nasal/throat swab to test for the presence of RNA released from the virus.  Researchers are now developing tests for antibodies that develop once a person has been infected with the virus. Since so much is unknown about the virus we are not sure how much antibody you need to be considered immune, whether immunity is long-term, or whether recovery from virus makes you immune against a second infection. More clinical research is required to answer these important questions. It is believed that antibody testing will be one solution to get the economy back up and running, but this is not ready yet to be deployed at a population level.

When can we expect a vaccine against the novel coronavirus?

Vaccines are very hard to produce and need time to be tested for safety and efficacy, before being given to diverse populations.  While we wait for the vaccine development, we are hoping for some sort of herd immunity, which means that as more and more people become immune naturally (through previous exposure or infection), the virus will not have the same impact, reducing the number of people who exhibit symptoms, and preventing our health care system from becoming overrun.

Is there a possible insulin shortage in Canada?

The Canadian supply of insulin is good, but some distribution challenges have occurred. Production is going well and supply is not a worry, especially with the decline of cross-border purchasing of insulin from the USA. It is not necessary to stockpile insulin, as hoarding could impact others from getting their supply of this life-saving medication. Other medications (not insulin) used in the treatment of diabetes have seen recent shortages, but this is not due to COVID-19, but other health and regulatory concerns.

Should I get my routine labs done during the pandemic?

During the pandemic, many Endocrinologists are conducting telephone and video appointments rather than in person appointments. To prepare for these appointments many physicians are asking for the health data, like CGM reports, foot self-exams, etc., in advance.  In many cases, lab work is not urgent, but it is best to follow the advice of your physician before deciding not do routine blood work.

 

Diabetes Action Canada and our response to COVID

Coronavirus cells

The sudden COVID pandemic has been a dramatic disruption for all members of Diabetes Action Canada. For persons living with diabetes, the change in access to health care has magnified the challenges already in existence. For our health care professionals engaged in clinical research, many have experienced re-deployment to support hospital and other service needs.  Our clinical trials that require face-to-face interaction have been temporarily stopped, although some have been able to adopt virtual communication for data collection and analysis. But for our digital health researchers the pace has increased considerably with the rapid offerings of new research funding focused on COVID-related urgent clinical questions.

We are fortunate to have among our investigators and collaborators some of Canada’s foremost primary care and population health researchers. They have turned their attention to using both their skills and provincial diabetes-related health data sources to design studies that focus on how persons with diabetes are being affected by the COVID pandemic challenge. Jean-Pierre Després and colleagues in Quebec City are analyzing the psycho-social impact on persons with chronic conditions including diabetes. Michelle Greiver in Toronto is using primary care electronic medical record data to identify those individuals with diabetes at greatest risk for adverse health outcomes. Valeria Rac is examining the change to virtual care in both the hospital and community setting to find out how health outcomes, patient and health professional experiences have been affected.

Our SPOR Network is demonstrating adaptation and flexibility in the face of extreme challenge. In addition, the novel research conducted during the COVID crisis will generate important new evidence about gaps in our health system and direct our planning for future patient-oriented studies to fulfill our mission of improving health outcomes for Canadians living with diabetes.

Patient Partner Profile – Kylie Peacock

By Krista Lamb

Diabetes Action Canada is pleased to welcome a new Patient Partner to our team. Nova Scotia’s Kylie Peacock has lived with T1D for more than 20 years and has been an advocate and a supportive voice in the community, in particular in the area of diabetes and mental health. She has joined the Research Governance Committee and will be a Patient Representative for the National Diabetes Repository.

Peacock is pleased to be able to share her experience to help shape research and improve outcomes for the T1D community “Living with type 1 diabetes shaped my childhood and continues to impact my everyday life as an adult,” she says. “These past and current lived experiences drive my passion for patient-centred design and care in every aspect of the healthcare system, and motivate me to advocate for inclusion of the patient voice/lived experience in healthcare system design, healthcare research and innovation, and overall healthcare improvement. My experiences of living with type 1 diabetes and having to navigate the healthcare system have been difficult; positive and negative at times, but every single interaction with the system has encouraged me to advocate for better healthcare design, implementation, and care for all.” 

During university, Peacock met Dr. Michael Vallis, a leading expert in diabetes distress. Through him, she learned about the importance of patients taking an active role in research, and she began not only to share her story, but to contribute to his research. She sees her new role with Diabetes Action Canada as a continuation of this work. “I hope that my experience of living with type 1 diabetes can inform the type of research questions diabetes researchers ask and the studies they design. I hope to show others that there are faces and names behind the numbers and that our stories of living with diabetes are extremely important to listen to,” she says.

Conrad Pow, a Senior Project Manager at Diabetes Action Canada, is extremely pleased to have Peacock on board, given the role she has played in his own experiences with T1D. “I was at a primary care conference in Chicago in 2018 and then went straight to a patient-focused conference in Ottawa. While there I saw a familiar face from Chicago stand up and talk about her experiences living with type 1 diabetes,” he says. “Kylie’s candidness and openness struck me, as just a few weeks earlier my four-year-old daughter had been diagnosed with T1D. Kylie and I started talking, and before we knew it – a friendship was formed. She helped me navigate my daughter’s new diagnosis and has been a great support. Kylie was inspired by Diabetes Action Canada’s platform on involving patients in research and giving them oversight in how data is used.  She expressed interest in getting more involved and now I am happy to have her as part of the team.”

Diabetes Action Canada has a wide range of Patient Partners who inform all areas of the work being done by the organization. Peacock hopes even more people living with diabetes will consider taking part in order to ensure diverse voices and experiences are represented. “Being a Patient Partner is extremely rewarding. Not only do I have the opportunity to contribute to meaningful and impactful research, but I have the opportunity to build important relationships with other patient partners, staff, and researchers,” she says.

Interested in becoming a Patient Partner? Learn more here.

Experts Living with Diabetes at the Heart of Diabetes Action Canada Study

By Krista Lamb

A recent study by Diabetes Action Canada researcher and recipient of the 2019-21 postdoctoral fellowship award, Dr. Ruth Ndjaboue, focuses on the expertise of those most closely involved in the diabetes community – persons living with diabetes. Aimed at helping health professionals and those living with or affected by the disease better understand how to improve self-management and care, Ndjaboue had some surprising results.

“For me as a scientist new to diabetes research, I wondered if people might point out what can be done technically for improving medical care or treatment,” she says. “But most of the people were more interested in general humanistic concerns, such as having respectful communication and people paying attention to what matters to them,” she says.

This is reflected throughout the results. The individuals who were interviewed talked less about wanting more access or improved treatments, and instead focused on the ways in which their health providers understood and acknowledged the impact diabetes has on their lives.

For those from Indigenous communities or ethnic minorities, there was an even larger focus on communication and understanding. While the words “colonization” may not have been spoken Ndjaboue felt the implications where there.  “So many people said things like, “People need to know that there’s a social reason why our people, Indigenous people, have diabetes”. So, I think they were pointing to colonialism, even if the word was not used,” she says, noting that the Indigenous community members in her sample were more likely to highlight cultural safety as necessary in care.

This was an important finding for Ndjaboue. “When we are looking for ways to improve healthcare for a minority, and we have people bringing up the problem of discrimination and the problem of disrespecting care because of the way they are or because of the way they look, or any other stereotypes, it means that this is what matters the most to them. Maybe much more so than the biological aspects and the physical things,” she says.

The findings from the interviews with those who live with diabetes have been compiled into a number of considerations for healthcare professionals and for those living with this condition, which will be available soon. The recommendations focus on elements of communication such as empathy, and respect, as well as acknowledgement of the feelings and emotions that come with diabetes, and a need to provide care that is positive, supportive and engaged.

“Pay attention to the emotions of patients and caregivers,” Ndjaboue suggests to health providers. “If those living with diabetes were to comment, they will certainly say: try not to tell people only what is bad, and have a positive attitude towards diabetes to show that it’s possible to have a good life while you are managing your diabetes, it’s not always bad.”

Read the paper now. 

COVID-19 Diabetes Resources

COVID-19 virus cells

Like all organizations, Diabetes Action Canada has felt the impact of the current COVID-19 pandemic. Many of our team members have seen their roles adapt or change during this time. Please read our recent update to learn more about how we are adapting to this new normal. 

With so much information about the coronavirus and COVID-19 circulating, we wanted to share some of the best information currently available to help those living with diabetes manage during this challenging time.

In April, Diabetes Action Canada held an open forum where our Patient Partners could ask their questions about COVID-19 to a number of leading experts in the diabetes field. We have created a detailed FAQ based on these discussions.

The resources below come from our partners, who are working with leading experts to answer your questions and manage your concerns.

This year, more than ever, a flu shot is important. Here are some resources you might find helpful:

From the Government of Canada

From the Government of Ontario

Diabetes Canada Clinical Practice Guidelines on Diabetes and the Flu Shot

And more resources on diabetes and COVID-19:

Managing type 2 diabetes during COVID-19: a guide for primary care providers.

Diabetes Action Canada has joined organizations around the world in a simple goal: tap into the power of the global diabetes community to save lives. Learn more about this initiative and find resources at CoronavirusDiabetes.org.

Diabetes Canada has a full section on their website dedicated to answering frequently asked questions about diabetes and COVID-19, as well as providing useful links and resources: Diabetes Canada – COVID-19 Resource Centre

JDRF Canada also has a dedicated section of their website specifically for those living with type 1 diabetes: JDRF – Coronavirus and Type 1 Diabetes – What You Need to Know.

The JDRF site includes information from endocrinologists and experts, as well as links to other resources, including this helpful video by endocrinologist Dr. Anne Peters, which has been posted by Beyond Type 1. 

For parents of children with type 1 diabetes, the Canadian Paediatric Society has put together a resource that looks at issues such as DKA risk, and answers many questions about COVID-19 and your child.

Hamilton Health Sciences and McMaster University have also created a COVID-19 resource for children and adolescents with type 1 diabetes.

The BETTER project brings together patient-partners who live with type 1 diabetes, parents of children with type 1 diabetes, researchers, health professionals and decision-makers who are already involved and who want to advance research to improve clinical practices, treatments, and quality of life for people who live with type 1 diabetes. They have a wealth of information on their website about type 1 diabetes and COVID-19.

Our colleagues at Can-Solve CKD Network have posted a list of useful resources for those who are living with kidney disease or renal conditions, which you can access on their website.

For some people with diabetes or their caregivers, the COVID-19 pandemic has meant managing wound care from home. To better support this, Wounds Canada has provided resources on how to safely change dressings.

The American Diabetes Association also has information available about diabetes and COVID-19, including a feed featuring relevant research papers.

Beyond Type 1 is an American organization, so not all of the information on their COVID-19 resource pages will be relevant to Canadians. However, they have a wealth of excellent resources you may find helpful or interesting. Their overview page is a good option for information on a number of topics.

The team at UHN has developed a page where you can find the latest scientific findings and accurate information on COVID-19. This page is aimed at healthcare professionals and also includes some useful tips for  self-care.

Additional information on COVID-19 can be found on these websites:

 

Life Inside the Loop

Cell phone in a hand

By Krista Lamb

Some people with type 1 diabetes aren’t waiting for treatments to catch up to their needs—they’re taking matters, and technology, into their own hands.

*DIY closed loop technologies have not been approved by Health Canada. Please consult your endocrinologist or diabetes care team before making any changes to your treatment plan. Diabetes Action Canada does not endorse non approved therapies or devices.  This article is for information purposes only. 

Diabetes Action Canada’s patient-oriented research group focused on Type 1 Diabetes is seeking to ensure the patient voice is directing research priorities, to increase the impact of diabetes research, and accelerate the translation of diabetes research to clinical practice to improve the lives of people living with T1D across Canada irrespective of where they live. The DIY loop / #wearenotwaiting movement highlights both the impact that persons living with diabetes can have on improving their lives, and their frustration with the slow pace of translational research. 

While Diabetes Action Canada is committed to bringing the patient voice to research conducted in many academic institutions across the country, it does not endorse or promote the use of DIY systems, as they are unregulated by Health Canada and academic research in the area has not shown a definitive benefit. The following is a story driven by the passion of our Patient Partners, and we hope it will inspire further investigation in this area of type 1 diabetes research.*

 

Pina Barbieri had started to feel like an omnipresent voice in the background of her daughter’s life—and she didn’t like it. When Laura was diagnosed with type 1 diabetes, Barbieri opted to remain a stay-at-home mom a few extra years to help her daughter manage.

While they had moved on from the “archaic” glucometers that had shocked Barbieri when she was handed one upon Laura’s diagnosis and were using a pump and continuous glucose monitor (CGM), Barbieri was still basically monitoring her daughter’s blood sugar from afar. If she saw on her watch that Laura was going low, she called the school to request that her daughter make an adjustment, or she’d send a message directly. “She’d get these text messages all day long,” says Barbieri. “It leads to burnout if I’m constantly giving her commands. And that’s what it is, it’s commands, ‘change your basal, change your basal, change your basal…’”

All of this oversight was part of their lives for years until they discovered a do-it-yourself (DIY) option that allowed patients and families to take control of their diabetes. A growing number of people with type 1 diabetes have decided to try closed loop systems, where a CGM and insulin pump are set up to talk to each other and provide a semi- automated insulin delivery system. While there are now a limited number of approved hybrid closed loop systems available in Canada, many patients are instead using existing pumps and technologies to create their own homemade system. An app called Loop is at the heart of these DIY versions and, for many, this unapproved underground technology has been transformative. “Loop came along and all of that was gone,” says Barbieri of the constant messages to her daughter. “Loop came and it was all quiet.”

Loop was designed by those who, like Barbieri and her friend Kate Farnsworth, were exhausted by the process of managing their own or their children’s diabetes. They were buoyed by the advent of CGM and insulin pumps, but frustrated by how slowly a fully automated process was taking to get to market. Farnsworth, who runs the popular Looped Facebook group, is at the heart of the Canadian movement. She and Barbieri learned about the DIY process while at a conference in California more than three years ago and the pair had ordered the needed hardware before they even left the state. Farnsworth followed the online instructions and quickly had a workable system for her daughter, Sydney.

Dr. Peter Senior, Kate Farnsworth, Dr. Bruce Perkins
Dr. Peter Senior, Kate Farnsworth, Dr. Bruce Perkins

 

For Farnsworth and Sydney, it has been life-changing. It allows Sydney to be a normal teen—she pulls out her phone to note her carbohydrate intake at meals or adjust the system settings, but since teens are on their phones all the time, it doesn’t seem unusual to anyone. While there are limiting factors, including the not insignificant fact that only specific pumps can be used with the Loop app, many of which are no longer being manufactured, for some, the initial complications are well worth it.

Once you have the necessary parts and have figured out how to set up the Loop app or another open source version of the code on your cell phone you need to follow the instructions available online to set up the system—Farnsworth likens it to following a recipe—then make the appropriate adjustments as you adapt to the automated system. When it works properly, it can remove the need for much of the significant user input most current systems require. The CGM reports your blood sugar levels to the app, which then tells the pump to make the appropriate adjustments to insulin delivery. The wearer still needs to tell the system how much they are eating and bolus as needed, but much of the ongoing work of managing blood sugar levels is automated.

These systems are, of course, DIY. There is no Health Canada oversight to regulate their use and no company providing customer service. Those who have turned to a DIY closed loop must rely on people like Farnsworth and the thousands of others on her Facebook group if they run into issues.

Dr. Bruce Perkins, an endocrinologist from Toronto’s Mount Sinai Hospital who lives with type 1 diabetes, understands the frustration that has led many to start building their own automated insulin delivery systems. In his practice, he sees patients who are using both closed loop systems that are regulated and those using do-it-yourself systems. “They can all be glitchy, technologically,” he says. “Whether it’s an approved system or not, they all require some work and troubleshooting on the patient’s part. Just because a system’s approved doesn’t mean it’s perfect or that a do-it-yourself system is imperfect.”

As an endocrinologist, Perkins likes the comfort level that comes with knowing a patient with a sensor issue or a system failure can call a 1-800 number or contact the company who manufactured the system for help. However, he is open with his patients about the DIY alternatives and supportive of those who want to try them. “I think that people should know all their options,” he says. “Everyone takes on their diabetes management differently depending on how they were educated about diabetes or their own diabetes experiences.”

Before someone tries a DIY system, though, he offers a few things to consider. Talk to your diabetes care team, be sure you have access to the needed equipment, that you feel confident in understanding the instructions, which can be complicated, and that you know what to do if the system doesn’t work properly. “Not everyone can take on a project like this,” he says, and it’s perfectly alright if it’s not the right solution for you.

That was the case for British Columbia mom Stacey Chipka. When her son turned 18, she thought a DIY closed loop system would be a good option, as she moved away from playing an active role in managing his diabetes. Chipka found it fairly easy to set up the system herself and she was incredibly impressed with the work citizen scientists had done in terms of making the information available and easy-to-follow, but for her son it just wasn’t the right fit.

A DIY closed loop system

The DIY system they used required an iPhone, which meant her son, an Andriod user, had to carry a second phone as well as additional technology—all of which required separate chargers. He also found the frequent updates and need to troubleshoot various issues unrealistic for his lifestyle. “It just became too cumbersome and too much to worry about and to have to think about. What I was hoping would take some of the pressure and load off of him actually ended up being the exact opposite,” Chipka says. When one of the components stopped working, her son told his parents not to buy another one. Chipka thinks that in the future, when he’s older and the technology is more streamlined, he would try another closed loop system but for now it’s off the table.

Dr. Peter Senior, an endocrinologist at the Alberta Diabetes Institute, has taken a proactive approach in recommending DIY systems to some patients who he feels have no other options and might benefit. Many in his practice are there because of a failed islet transplant and are managing severe hypoglycemia unawareness or have come to the point where they have tried everything available and are still struggling with their diabetes management. For these patients, Senior has seen increased engagement and better control while using a DIY closed loop.

“Endocrinologists by and large are pretty conservative and will always be a little anxious about recommending things, particularly when there’s this perception of risk,” Senior says. “But patients are already facing risk. The algorithm they’re currently using is in their head or in their gut.” A DIY system, while not perfect, offers relatively little risk in his opinion, as long as the patient has access to the needed sensors and equipment and is willing to learn how to use the system effectively.

Those using closed loop—be it DIY or approved—like the reduced impact that diabetes has on their lives. Barbieri notes that when her daughter transitioned to the Loop app, it freed her up to be a better parent to her other two children. She was suddenly able to offload some of the stress of managing Laura’s diabetes to this system.

This mirrors what Senior has seen, “that reduced burden is what I think people are enjoying. You’re hearing things like, “I’m sleeping through the night, I wasn’t thinking about snacks all the time. It’s just freeing up some cognitive bandwidth to live life.”

This has been true for Farnsworth, who has become one of the DIY community’s biggest advocates. However, she knows it’s not a cure. “It’s not the silver bullet for diabetes, it’s a great tool, it helps us immensely, we couldn’t imagine managing diabetes without it,” Farnsworth says, “But my daughter still has diabetes.”

Interested in learning more about trying a closed loop system? This article from Dr. Bruce Perkins, an endocrinologist and professor at the University of Toronto, provides some of the practical things you should know before starting.

If you have specific questions, please consult your endocrinologist.

Is hybrid closed loop right for you?

 

By Bruce A. Perkins, MD, endocrinologist, and person living with T1D

Adapted by Krista Lamb

Living with type 1 diabetes can be complicated at times, and new technologies can add another layer of complexity. For some, new technology has meant better blood sugar control and improved quality of life. For others, well, it’s just another item on an already exhaustive list. Still others are achieving targets and self-managing fine without these systems, and they worry a new technology could throw off the delicate balance they’ve worked hard to achieve.

This is the reality as patients and healthcare providers try to determine if one of the latest technological advancements—a hybrid closed loop system—is the right fit.

A hybrid closed loop system automates basal insulin delivery throughout the day, still relying on the patient to deliver bolus insulin at meal times and correction doses for high blood sugars. For many, this system reduces the burden of managing blood sugar levels throughout the day. However, it requires an engaged and informed user who has been coached by their healthcare team in how to use the system safely and effectively.

In Canada, there is one approved technology (Medtronic 670G), some unapproved “do it yourself (DIY)” systems that use cell phone apps, and new systems are expected to be approved soon, following recent approvals in the U.S.

Is a hybrid closed loop system right for you? Below is some information, adapted from my recent paper in the Canadian Journal of Diabetes, to help you decide.

Maintaining the insulin pump and sensor functions require some work.

For a patient, this means changing and rotating the infusion sets regularly, managing the sensor and transmitter, calibrating with a glucose reading at least two to three times a day, and responding to the system when it requests additional information. For someone who is comfortable with the technology and with the level of awareness required, this may not be an issue, but you want to be certain you understand what needs to be done and how often before you start using the system.

It can be expensive.

The above-mentioned sensors and transmitters, as well as the hybrid closed loop system itself, involve a number of financial considerations. If you do not have an insurance plan or the ability to incorporate the cost of using a hybrid closed loop system into your budget, it is likely not the solution for you. Even a DIY version requires an investment in the initial technology (which can be challenging to find) and still requires the use of sensors. Starting with access to only a temporary supply of sensors is not advised.

You need to understand the goal blood sugar range – and it’s not necessarily what you think it should be.

Patients using a hybrid closed loop system like the Medtronic 670G may be surprised that their fasting blood sugars are as high as 6.7 mmol/L, for example. But this is the system’s intended target. Research shows that maintaining SG levels between 4-10mmol/L for at least 70% of the time will approximately equal an A1C of 7%.

Of course, the system won’t provide such a stable blood sugar level, but it aims to keep your blood sugars in target range of 4-10 mmol/L. If you think you can achieve better targets without intervention, then an open loop system is probably a better option for you.

You need to trust the system.

A hybrid closed loop system uses an algorithm to determine the user’s insulin needs. After two to six days of monitoring your glycemic patterns the Medtronic system can be used in auto mode. During this time, a micro bolus of insulin is delivered every five minutes and adjustments are made if the sensor glucose level drops below or rises above the set threshold. For the user of any system, there needs to be a certain amount of trust in the system. If you focus on management at meal times and let the algorithm make decisions the rest of the time, your outcomes will likely be better than if you try to override the system. Unless you receive an alert telling you to make an adjustment (for example a hypoglycemia alert), you should avoid adjusting your insulin between mealtimes. Forcing a correction bolus could lead to hypoglycemia.

You have to focus on accurate delivery of the food bolus.

Most hybrid closed loop systems are not completely automated—the patient still needs to deliver an accurate food bolus. So while the system does an excellent job of maintaining blood sugars in target when you’re not eating, it depends on accurate notification of meals. You still need to count carbohydrates, evaluate your carb ratio and, in many cases, bolus before starting a meal. In fact, it’s often the most important element of successfully working with a hybrid closed loop system. If you are able to take an accurate food bolus, the system adjusts to bring your levels into the target range by the next meal or bedtime. If the bolus is missed or the carb count is inaccurate, the sensor glucose level may rise dramatically and the algorithm will not be able to bring you back into range in such a short time. If carb counting is a struggle or you often find yourself out of range after meals, you will want to work closely with your healthcare team if you decide to try a closed loop system.

Your care team can help with the details.

You’ve decided to try a hybrid closed loop system. You can afford the costs, you’re comfortable with the technology and you are providing accurate information at meal times. You will still want to consult closely with your healthcare team.

In my practice, those on a closed loop system have reported issues with the “dawn phenomenon”, where glucose levels rise as you wake. Users may also need to adjust the amount of carbs used to treat a hypo or have a shorter active insulin time. These are all things where your endocrinologist or other members of your diabetes care team can provide support.

In the end, the best diabetes management system is the one that helps you maintain your optimum glucose control without creating unnecessary stress in your life. You need to consider honestly how much or how little technology makes sense for you. Your healthcare team can assist in making these decisions by outlining the pros and cons of your options.

Adapted from the paper “Talking Points for Helping your Type 1 Diabetes Patient Decide About Hybrid Closed Loop”, published in the Canadian Journal of Diabetes, October 2019, written by Bruce A. Perkins, MD, MPH, Nancy Cardinez, NP, CDE and Christine F. O

Members Forum Overview

Woman speaking at event

Over the last few months, Diabetes Action Canada held two Members Forum meetings – one in English and one in French. These events brought together the broader Diabetes Action Canada community to share their thoughts on our Network and learn from our broader community.

The feedback received was excellent and is helping the organization with planning for 2020 and beyond. Below, is an overview of some of the ideas that were shared.

Communication:

Community members voiced a number of suggestions about how to share our message—everything from moderated sessions to blogs and video chats. A few highlights:

  • Patient Partners reminded our researchers of the need to provide opportunities for feedback on research underway—and to share that research in language that is understandable to everyone.
  • There was a request for more bilingual content and for more opportunities for our French-speaking Patient Partners to apply their experiences to research programs.
  • Members wanted to see stronger partnerships with our institutional partners’ communications teams to create more opportunities and awareness of our Network.
  • A media outreach strategy was suggested, as well as a focus on covering our events “as they happen” instead of after the fact.

Knowledge Translation:

Sharing the robust findings of the Diabetes Action Canada Network was a key part of these discussions. This included engaging policy-makers in research activities to better engage government at all levels and expand our reach to target more at-risk communities in their language of choice.

Research Planning:

Research continues to be the cornerstone of the work Diabetes Action Canada does and our members had many thoughts on ways to amplify the findings and better integrate those living with diabetes and other health care providers into the process. There was discussion of how to involve all members of the diabetes care circle, including social workers, pharmacists, diabetes educators, nurses and dietitians. Other suggestions involved including basic scientists in the network, giving Patient Partners an opportunity to share ideas for new research projects before they are planned, and engaging Patient Partners with research happening in their region.

The Diabetes Action Canada team looks forward to more of these discussions and to finding ways to implement as many of these suggestions as possible.

Patient Partner Report – Joint annual meeting of SQLNM, the CMDO network and COLosSUS Congress

Patient Partner in front of scientific poster

In February, Diabetes Action Canada Patient Partner and Scientific Ambassador Lucie Vaillancourt attended the Joint annual meeting of SQLNM, the CMDO network and COLosSUS Congress in Magog-Orford, Quebec.

For Vaillancourt, who has lived with type 2 diabetes for more than ten years, the event touched on many interests she has about nutrition, physical activity and healthy lifestyle habits. A former research nurse, Vaillancourt was also able to understand many of the more complex topics presented, which was helpful in getting the most out of this event.

“I was impressed with the interest and informed passion of the speakers,” she says. “The professionals and the students demonstrate a general desire to improve and contribute to better health for the population. I also observed that several speakers had patient partner participation at heart in the creation of their projects and throughout the entire research process.”

Vaillancourt attended presentations about the Laval University PULSAR project, which is a collaborative research platform with an intervention component in the area of ​​sustainable health. This talk also included information about Nutri Québec, a social project on the lifestyle of Quebecers. This study asks participants to provide their dietary information for study in return for a dietary evaluation at the end of the project. Vaillancourt was very interested in this particular program and plans to enroll and ask family members to also take part.

Another presentation on the patient-oriented research strategy discussed the primary aim of “the patient first.” There are currently 11 support units for SPOR across Canada and one in Quebec. Being able to involve patients in a research process from the start of the protocol is the basis of their strategy. The presentation also included information on how the program is promoting safe treatment of diabetes in the elderly and how access to patient data through electronic medical records (EMR) is an asset for clinical practice

Vaillancourt also saw Diabetes Action Canada Co-Scientific Lead, Dr. Jean-Pierre Després speak about promoting cardiovascular health in the workplace. The talk included a lot of information about overall heart health in Canada, focusing on the idea that it is better to be in good shape than to lose weight, which was positively received.

For future events, Vaillancourt would like to see presentations by patient partners. “An experienced patient partner who has participated in the development of a research project with clinicians or researchers could talk about their experience and stimulate others to integrate patient partners into their teams,” she says, suggesting that a joint presentation with a researcher and patient partner would work well in this setting. In addition, she would have liked to see other health professionals, such as kinesiologists, psychologists, social workers and others who work in a clinical or research setting represented. Overall, she was very pleased with the event and all that she learned.

Read Vaillancourt’s full report on this event in English or French

 

Tele-retina screening program paper published

The latest issue of the Canadian Journal of Ophthalmology features a paper by Dr. Valeria Rac and her team: Tele-retina screening of diabetic retinopathy among at-risk populations: an economic analysis.

The paper compares this Diabetes Action Canada program against other standard of care programs in rural and under-screened communities. Dr. Rac and her team found that tele-retina is a more cost-effective means of screening for diabetic retinopathy.

Read the paper online at the Canadian Journal of Ophthalmology now and learn more about the tele-retina screening program on our website.

 

 

 

 

National Diabetes Repository a Game Changer for Research

For diabetes researchers across Canada, data from patients is a critical tool in determining what projects will truly make a difference for people living with the disease. Understanding how many people have diabetes, what type of diabetes they live with, and the number and types of complications they are experiencing enables health service researchers to design, implement and evaluate projects with real impact. The more detailed information available, the easier it is to hone in on specific health challenges that matter most to patients.

This is one of the core reasons Diabetes Action Canada developed the National Diabetes Repository (NDR). The NDR is a tool that researchers can use to better analyze information about people living with diabetes across Canada to improve health outcomes and prevent complications.

“Currently, we have valuable information available from across five provinces,” says Conrad Pow, a senior project manager for Diabetes Action Canada who oversees the NDR. “Our goal is to have researchers use this comprehensive information to better showcase the actual health issues that are being experienced by Canadians so that policy makers and governments can invest wisely in programs and research that will truly make a difference. We also want to identify the risk population that is in need of a preventative intervention to avoid the devastating complications associated with diabetes such as blindness, kidney failure and lower limb amputation.”

For example, using the NDR, an approved researcher could see that a woman with type 1 diabetes was diagnosed with kidney disease at age 54, then scan the database to find out how frequently women in their 50s with type 1 diabetes are diagnosed with this complication. They can also see the type of medication these women are on to prevent kidney disease and whether there are any other contributing factors, e.g., high blood pressure. This type of data can be extremely helpful to establishing better clinical practice and for advocating for re-direction of health care resources if a trend is identified.

All the information collected in the NDR is de-identified, which means there is nothing in the database, such as names, birth dates or health card numbers, that could potentially identify the patient. Approved researchers can access the information in a secure analytic environment that has been designed not only to meet, but to exceed the standards outlined in privacy legislation.

One unique feature of this project is that oversight of the use of the repository’s data is done through dedicated Patient Partners working alongside researchers, healthcare providers and experts in privacy and law. It is still uncommon for a research organization to incorporate patients into the governance of a project like this and, as highlighted in a recent article from Diabetes Action Canada in the April 2019 edition of the British Medical Journal, this collaborative approach has been extremely successful.

Pow believes the decision to have patients play an active role in this research program has paid enormous dividends. “Patients should be at the centre of all research and they should have a seat at the table when decisions are being made about what research projects have access to their data—even when that data is anonymous,” he says. “Patient partners have the ability to sit with researchers and discuss the value of the work. For example, if a researcher wants to look at the impact of insulin pumps and whether or not this treatment has led to reduced hospitalizations, a patient who is advocating for improved coverage for pumps in their province can see the potential impact that of the research findings.”

The NDR is also showing great potential as a tool for those working with artificial intelligence (AI). “There has been growing interest in the ability for AI researchers and mathematic modellers to create risk calculators or predictive models by running advanced analytics on the data in the repository,” says Pow.  Diabetes Action Canada co-hosted an AI workshop with the Fields Institute for Research in Mathematical Sciences in Toronto in the spring of 2019 that enabled that research community to see how the NDR could add value to their work. “We are moving towards a future where we can predict someone’s individual risk of developing a complication, which would be truly a game changer,” says Pow.

Access to the NDR is now open to researchers whose projects are approved by the Diabetes Action Canada committee overseeing this work.

Are you a researcher interested in using the National Diabetes Repository? Learn more and request access on the Diabetes Action Canada website.

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. We focus 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 provincial governments to plan, execute and evaluate these research projects so we can improve patient outcomes and experiences.

Patient Partner Spotlight – Virtue Bajurny

Virtue Bajurny

When Virtue Bajurny was diagnosed with type 1 diabetes a few months before her sixteenth birthday, she was the only young person in the diabetes program at the hospital in Etobicoke where she was treated. That meant taking her diabetes education classes amongst older adults and seniors, all of whom were living with type 2 diabetes. It was an experience that left an impression and laid the foundation for how she thinks about diabetes as a whole.

“They were all so nice to me. They were like, ‘Poor you, you’re so young and you have to deal with this,’” she says. “So, I never really understood that thing where you’re in this camp or this camp [Type 1 diabetes or Type 2 diabetes] because everyone was so supportive and nice, it didn’t really make sense to me.”

That feeling of wanting more diversity and support for all people with diabetes, regardless of type, was one of the elements that drew her to working with Diabetes Action Canada when researcher Dr. Holly Witteman invited her to participate as a Patient Partner.

“I like that there’s type 2 and type 1 and a variety of people’s experiences,” Bajurny says. “Sometimes it feel like there’s a little bit of type 1 vs type 2. If you meet people and talk to them, it breaks some of that down a little bit.”

Now a social worker and therapist who has experience helping people with diabetes manage their mental health, Bajurny also felt she brought an important voice to the organization. During her graduate work, she had looked at research on diabetes and online peer support and been shocked by the gaps she saw in terms of knowledge and understanding. “I just remember reading research where I felt like it was really obvious they didn’t talk to people or have an advisor or somebody that had diabetes on the research side of it,” she says.

She remembers being frustrated reading the reasons the researchers thought they were getting a result and thinking, “No, you’re wrong.” She was also put off by the language used that labeled participants as “diabetics” and not people with diabetes. “They just felt biased in a certain way or not fully informed, like they didn’t have the full picture,” she says. “It felt important to have someone with lived experience on board so they could fill in the full picture.”

As a member of the Patient Circle and the committee working on Sex and Gender related research, Bajurny has enjoyed the opportunity to meet others from a range of diabetes backgrounds and being able to add her lived experience as a person with type 1 diabetes, as well as her professional experience as a social worker to the research process.

For Witteman, a researcher who also lives with type 1 diabetes, Bajurny’s involvement made sense because of her work in the online diabetes community and her ability to offer thoughtful reflections on the work. She also knows the importance of the patient voice in research.

“As a researcher, I’ve always worked with people who belong to the community I am aiming to serve with my research. It’s just how you do things, because if you don’t involve people who will ultimately use the research, you risk going in the wrong direction or missing opportunities,” Witteman says. “As a person living with diabetes who also happens to be a scientist, I see missed opportunities in other diabetes research where, had the researchers partnered with patients, they would have saved themselves a lot of hassle.”

Moving forward, Bajurny is hopeful there will be opportunities to add her experience to projects on mental health and quality of life in diabetes. She has seen the investment made in supporting the mental health of those with cancer through her professional work and knows there is value in pursuing this in the diabetes field. As the Diabetes Action Canada work continues to grow and develop, she would like the chance to be part of expanding research in this area.

Would you like to become a Patient Partner? Learn how!

Meet our Patient Partners.

Written by: Krista Lamb

Le Programme de mentorat des jeunes autochtones (IYMP) a publié le rapport de son rassemblement national!

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Les 20 et 21 mars, les membres de l’équipe du Programme de mentorat pour les jeunes autochtones (IYMP) de partout au Canada se sont réunis à Calgary, en Alberta, pour le 3e rassemblement annuel de l’équipe nationale. Le but principal de la réunion était d’examiner les progrès réalisés au cours des 2 dernières années, de partager les nouvelles données / informations recueillies à chaque porte et de définir une orientation préliminaire pour les 5 prochaines années en tant qu’équipe de recherche du volet 3 de Pathways. L’événement a comporté une série d’exercices de consolidation d’équipe, d’occasions d’apprentissage, de narration d’histoires et de cérémonies autochtones pendant que l’équipe planifie l’avenir de l’IYMP.

Pour en savoir plus sur cet événement, vous pouvez télécharger le rapport complet ici

Une analyse économique du programme de dépistage télé-rétine

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Le dernier numéro de la Revue canadienne d’ophtalmologie présente un article de la chercheuse de Diabetes Action Canada, la Dre Valeria Rac, qui analyse l’analyse économique du programme de dépistage de la télé-rétine pour la rétinopathie diabétique.

La Dre Rac et son équipe ont conclu que ce programme est un moyen de dépistage de la rétinopathie diabétique plus rentable que la forme de soins standard actuelle pour les personnes diabétiques urbaines et rurales qui risquent d’être sous-dépistées.

Vous pouvez lire l’article complet sur le site Web du Journal canadien d’ophtalmologie.

Pleins feux sur la recherche axée sur le patient à l’occasion du mois de la sensibilisation au diabète

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sensibilisation au diabète

Novembre est le mois de la sensibilisation au diabète, une occasion pour Action diabète Canada de mettre en évidence ses travaux dans la prestation de soins de santé orientés par les patients et la recherche qui sont universellement accessibles et conçus pour prévenir le diabète et ses complications.

Action diabète Canada fait partie du programme de la Stratégie de recherche axée sur le patient (SRAP) des Instituts de recherche en santé du Canada voué à l’intégration complète des patients au processus de recherche sur les interventions en santé.

« Les chercheurs et professionnels de la santé mettent au point des stratégies ou des programmes visant à venir en aide aux personnes vivant avec le diabète en mettant à profit l’ensemble de leurs compétences et connaissances professionnelles. Mais, ils oublient souvent de tenir compte des réalités du quotidien d’une personne vivant avec le diabète, ce qui fait que le projet a moins d’impact, déclare le Dr Gary Lewis, coresponsable scientifique à Action diabète Canada. En intégrant le vécu et l’opinion des patients qui collaborent à l’élaboration de nos programmes de recherche, nous pouvons formuler des solutions qui répondent aux besoins du patient, éliminent les principaux obstacles à l’accès aux soins de santé et accroissent les chances de succès de la mise en œuvre. »

Action diabète Canada a mis au point de multiples programmes avec ses patients partenaires qui témoignent de l’importance de cette collaboration vitale pour le développement d’interventions réussies en matière de soins de santé.

« Que ce soit par l’amélioration de l’accès au dépistage de la rétinopathie diabétique (dommages aux yeux), par des programmes de soutien améliorés pour les aînés atteints du diabète ou par l’amélioration de la résilience et du bien-être des jeunes autochtones afin de prévenir le diabète, nous savons maintenant comment mieux répondre aux besoins des personnes vivant avec le diabète, dit la Dre Catharine Whiteside, directrice générale de Diabète action Canada. Notre mission est d’améliorer l’expérience des patients et des professionnels de la santé, ainsi que les résultats pour la population, et de réduire les coûts des soins de santé liés au diabète. »

À ce jour, Diabète action Canada a soutenplus de 40 projets de recherche, y compris :

  • La création du tout premier Répertoire national du diabète, une plateforme sécurisée contenant des renseignements anonymes provenant de plus de 110 000 personnes vivant avec le diabète dans plusieurs provinces. Ce répertoire permet aux chercheurs d’avoir accès à de l’information qui est utilisée pour étudier les facteurs de risque liés au diabète, comme l’hypertension et un taux élevé de cholestérol, et de mettre au point des interventions favorisant de meilleurs résultats. Les données, qui ne contiennent aucun renseignement permettant d’identifier les patients, sont gérées de façon sécurisée, et leur utilisation est approuvée par une équipe de patients partenaires et de professionnels de la santé qui a établi des directives précises quant au moment et à la manière d’utiliser ces données aux fins de recherche.
  • Le développement continu d’un programme de dépistage rétinien à distance, conçu pour améliorer l’accès aux examens de la vue pour les personnes vivant avec le diabète. Cette approche a fait ses preuves en matière d’efficacité et de rentabilité dans le diagnostic de maladies oculaires liées au diabète qui étaient non diagnostiquées chez les populations à risque élevé associées à des taux de dépistage plus faibles. Le dépistage précoce de la rétinopathie diabétique et son traitement permettraient d’éliminer le diabète comme cause première de cécité chez les Canadiens en âge de travailler.
  • Des études menées par des membres d’Action diabète Canada révèlent une hausse du nombre d’amputations liées au diabète en Ontario au cours des 10 dernières années. L’une des complications liées au diabète les plus craintes, les ulcères du pied sont associés à une perte de la fonction nerveuse et à la maladie vasculaire périphérique qui peut, dans certains cas, entraîner l’amputation des membres. Les personnes vivant avec le diabète veulent des interventions qui permettraient d’éliminer les obstacles et de mieux répondre à leurs besoins quotidiens, y compris un accès régulier à des podologues afin de mieux prévenir et traiter les ulcères du pied. Le programme financé par Action diabète Canada rend possible cet accès – collaborant avec les experts et les patients dans le but de réduire le risque d’amputation.

« Action diabète Canada a créé une communauté collaborative avec les patients partenaires qui travaillent directement avec les chercheurs et professionnels de la santé, déclare la Dre Whiteside. Nous prévoyons des résultats qui transformeront la trajectoire de santé de tous les Canadiens qui sont aux prises avec le diabète et qui courent le risque de complications. »

Visitez le site Web d’Action diabète Canada et suivez-nous sur Twitter pour en savoir plus au sujet de ces programmes durant le mois de la sensibilisation au diabète.

Pour de plus amples renseignements :

Krista Lamb, directrice des communications
kristalamb@gmail.com
647 403-5627

Action diabète Canada présente la recherche axée sur le patient lors de la conférence professionnelle 2019 de Diabète Canada

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La conférence professionnelle annuelle de Diabète Canada s’est tenue à Winnipeg, au Manitoba, du 2 au 5 octobre 2019.  À nouveau cette année, Action diabète Canada a donné le coup d’envoi en animant la journée des stagiaires qui a précédé la conférence.  Ce fut la journée des stagiaires ayant connu le plus de succès à ce jour, avec 29 participants.  Nous nous sommes entretenus avec Ruth Ndjaboue Njike, Ph. D., stagiaire d’Action diabète Canada, qui était présente. Elle a obtenu une bourse postdoctorale 2019-2021. Elle a eu la gentillesse de nous faire part de son expérience.

Cliquez ici pour lire l’histoire en entier

 

Prix d’application des connaissances 2019-2020 d’Action diabète Canada pour étudiants des cycles supérieurs et postdoctoraux

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En mai, le programme d’application des connaissances d’Action diabète Canada a lancé son deuxième concours de bourses pour étudiants des cycles supérieurs et postdoctoraux. Au total, cinq soumissions ont été reçues. Elles ont été évaluées par les chercheurs et les patients partenaires.Cette année, le programme d’application des connaissances a remis deux bourses d’un an d’une valeur de 19 000 $ à des étudiants des cycles supérieurs et une bourse d’un an d’une valeur de 40 000 $ à un étudiant postdoctoral. Nous sommes heureux d’annoncer le nom des lauréats de l’édition 2019-2020 du concours annuel de bourses d’application des connaissances pour étudiants des cycles supérieurs et postdoctoraux.

  • Choumous Mannoubi (bourse de doctorat) – Conception d’une plateforme de télénutrition pour la gestion thérapeutique des patients souffrant de maladies chroniques – Université de Montréal, Superviseure : Brigitte Vachon; co-superviseure : Dahlia Kairy
  • Jaime Boisvenue (bourse de doctorat) – Comprendre l’expérience du vécu avec le diabète de type 1 et ses motivations pour la recherche d’éducation sur le diabète : une initiative de Canadian Dose Adjustment for Normal Eating (CanDAFNE) – Université de l’Alberta, Superviseure : Rose Yeung
  • Lydi-Anne Vézina-Im (bourse postdoctorale) – Hygiène du sommeil et habitudes de sommeil chez les adultes souffrant de diabète de type 2 : favoriser la compréhension pour prévenir les complications liées au diabète – Université Laval, Superviseure : Sophie Desroches; co-superviseur : Charles M. Morin

Félicitations à tous les récipiendaires et bonne chance dans vos projets de recherche!

Groupe d’application des connaissances d’Action diabète Canada

Diabetes Action Canada Knowledge Translation Graduate and Postdoctoral Fellowship Awards 2019-2020

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In May, the Diabetes Action Canada Knowledge Translation Research Program launched its second Knowledge Translation Graduate and Postdoctoral Fellowship Competition. A total of five applications were received and evaluated by researchers and Patient Partners.

This year, the Knowledge Translation Program granted two doctoral fellowships, of 19,000/year for one year, and one postdoctoral fellowship award, of $40,000/year for one year. We are pleased to announce the successful recipients of the fellowship awards for this year’s KT Graduate and Postdoctoral Fellowship Awards Competition 2019-2020.

  • Choumous Mannoubi (doctoral fellowship) – Design of a tele-nutrition platform for the therapeutic management of patients with chronic diseases – Université de Montréal, Supervisor: Brigitte Vachon; Co-Supervisor: Dahlia Kairy
  • Jaime Boisvenue (doctoral fellowship) – Understanding the type 1 diabetes lived experience and its motivations in seeking diabetes education: A Canadian Dose Adjustment for Normal Eating (CanDAFNE) Initiative – University of Alberta, Supervisor: Rose Yeung
  • Lydi-Anne Vézina-Im (postdoctoral fellowship)Sleep hygiene behaviors and sleep patterns in adults with type 2 diabetes: Understanding to help prevent diabetes complications – Université Laval, Supervisor: Sophie Desroches; Co-Supervisor: Charles M. Morin

Congratulations to all the DAC Knowledge Translation Awardees and good luck with your research projects!

Diabetes Action Canada Knowledge Translation Group

Diabetes Action Canada highlights Patient-Oriented Research at the 2019 Diabetes Canada Professional Conference

Diabetes Canada held its annual Professional Conference in Winnipeg Manitoba on October 2nd – Oct 5th, 2019.  Diabetes Action Canada once again kicked off the event by hosting a pre-conference trainee day.  This was the most successful Trainee Day yet with 29 attendees.  We as an opportunity to connect with one of our Diabetes Action Canada trainees, Dr. Ruth Ndjaboue Njike, who attended the event and is a 2019-2021 postdoctoral fellowship awardee. Ruth was kind enough to share her perspectives on her experience below.

I had the opportunity to attend the Diabetes Action Canada Trainee Day first in 2018.  Then it was such a great experience for many reasons, but the recent 2019 Trainee Day was even better. It all started with the interactive layout of the room.  Everyone was seated in small groups around a round table, leading to a more casual environment.  Spending almost the whole day with the same people was itself an ice-breaking activity!  People seated with me were from different academic background (basic science, health profession science, medicine and social science) and as the day progressed, we learnt about each other.

Click to read Ruth’s full story


On Thursday October 4th, 2019 Diabetes Action Canada was honoured to host a symposium on the Role of Patient-Oriented Research in the Development of New Models of Care.  This symposium featured threes talks from our research Network highlighting successful patient engagement in research planning, design and implementation.  These talks included:

  1. “Transforming Type 1 Diabetes Care – a digital platform to accelerate research and build community”, presented by Kate Farnsworth, Dr. Shivani Goyal and Dr. Peter Senior from the Innovations in Type 1 Diabetes Program. This talk highlighted the patient co-design process in building a digital platform to connect those living with type 1 diabetes with clinical research opportunities
  2. “Engaging Patient Partners in Co-Design of a Community-Based Self-Management Intervention for Older Adults with Diabetes and Multiple Chronic Conditions” presented by Frank Tang, Dr. Maureen Markle-Reid and Dr. Jenny Ploeg from the Aging, Community and Population Health Program. This talk discussed the role of Patient Partners in their community-based intervention to promote health aging at home for individuals with diabetes and multiple co-morbidities.
  3. “Indigenous Partners Empowering Wholistic Approaches to Wellness” presented by members of the Indigenous Patient Circle, Dr. Alex McComber, Sasha Delorme, Kenya Beardy, Barb Nepinak, and Philina Sky. This talk featured the narratives of the members of the Indigenous Patient Circles and the personal and community struggles experienced when living with diabetes.

This event was very well attended and provided an opportunity for Diabetes Action Canada to promote patient-oriented research and its application in research to improve models of care at both the community and personal level.

L’opinion des patients transforme la recherche dans les bases de données

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Par Krista Lamb

Comment savoir le nombre de personnes vivant avec le diabète dans une province? Ce chiffre augmente-t-il ou diminue-t-il? Les personnes vivant avec le diabète de type 2 courent-elles plus ou moins de risques de faire un infarctus après 50 ans? Les personnes ayant le diabète de type 1 et qui se servent d’une pompe à insuline ont-elles moins de complications associées au diabète que les personnes qui ne se servent pas de pompe?

Les chercheurs sont en mesure de répondre à toutes ces questions s’ils ont accès à des données sur les personnes vivant avec le diabète. Voilà l’une des principales raisons pour lesquelles Action diabète Canada a mis sur pied le Répertoire national du diabète. Le Répertoire est un outil dont peuvent se servir les chercheurs pour analyser l’information sur les personnes vivant avec le diabète partout au Canada afin d’améliorer les résultats en matière de santé et de prévenir les complications. L’utilisation des données est supervisée par des patients partenaires dévoués qui collaborent avec des chercheurs, des fournisseurs de soins et des experts de la vie privée et du droit. Il n’est toujours pas fréquent qu’un organisme de recherche intègre des patients à la gouvernance d’un tel projet et, comme le souligne un article récent du numéro d’avril 2019 du British Medical Journal, cette approche collaborative a été un franc succès.

Cliquez ici pour lire l’histoire en entier

How the Patient voice is Transforming Database Research

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How do we know the number of people living with diabetes in a province? Is that number going up or down? Are people living with type 2 diabetes more or less likely to have a heart attack after they turn 50? Does a person with type 1 diabetes using an insulin pump have fewer diabetes related complications compared to those without an insulin pump?

These are all questions researchers are able to answer when they have access to data about people living with diabetes. It’s one of the core reasons Diabetes Action Canada has developed 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. It is still uncommon for a research organization to incorporate patients into the governance of a project like this and, as highlighted in a recent article in the April 2019 edition of the British Medical Journal, this collaborative approach has been extremely successful.

Click Here to read full story

Opening Letter from Gary and Jean-Pierre

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Each year we see amazing strides in patient engagement within our research activities.   This year, some of these successes in patient engagement were highlighted at the 2019 Diabetes Canada Professional Conference during a 90 minute symposium. Dr. Ruth Ndjaboue, one of trainees, presents her perspectives on patient engagement and the pre-conference trainee day in this newsletter.

Over the past year, Diabetes Action Canada has engaged in performance assessment to better understand the impact of our activities in fulfilling our mission of improving health outcomes for persons living with diabetes. An in-depth Network Evaluation prepared by the research teams of Drs. Val Rac and Mathieu Ouimet has revealed the importance of our growing inter-disciplinary collaborations that evolve around the experiential knowledge and perspectives of our Patient Partners. Internal communication among our members has emerged as an area for improvement. We have not engaged a Communications Consultant, Krista Lamb, who is assisting us in improving the readability and accessibility of the information generated by our Network including through social media.  The Network Evaluation Report has been shared internally with our Operations and Management Committee as well as externally with CIHR and the external review committee. The content will be shared more broadly, once the peer-reviewed publications are in press in the near future.

The External Scientific Review of Diabetes Action Canada, which concluded at the end of November, was recommended by our leadership and Steering Council (although not required  by CIHR).  The panel of four external reviewers with expertise spanning all aspects of our SPOR Network activities, conducted interviews with Patient Partners, Researchers, Steering Council and Staff members to gather information and insight about our research and organizational structure.   Although a detail report is still pending we heard preliminary positive and constructive feedback from the panel and we look forward to acting on their recommendations. We want to thank all of those members of our Network who took the time to attend the external review in person, particularly those who travelled from across the country.

We hope you enjoy the stories in this newsletter as we strive to make the content more interesting to read.  We feature interviews with both Dr. Charles de Mestral on his recent media appearance and publication on diabetes-related lower limb amputations in Ontario and with our National Diabetes Repository team and how the repository is being used in research projects.  Finally, we share the recent press release for Research Canada, highlighting our patient-oriented research for diabetes awareness month. Finally, we wish to congratulate the recipients of our Knowledge Translation scholarship awards who are listed in this publication.

Wishing you all a happy a restful holiday season.

 

The Indigenous Youth Mentorship Program (IYMP) has released the report from its National Gathering!

On March 20th & 21st, the Indigenous Youth Mentorship Program (IYMP) team members from across Canada came together in Calgary, Alberta for the 3rd Annual National Team Gathering. The primary goal of the gathering was to review progress over the past 2 years, share new data/information gathered within each door and set a preliminary direction for the next 5 years as a Pathways Component 3 Research Team.  The event held a series of the team building exercises, learning opportunities, story telling, and indigenous ceremonies as the team plans for the future of IYMP.

To learn more about this event you can download the full report here

Taking steps in the right direction to prevent diabetes-related amputation

 

That Dr. Charles de Mestral spent the morning before our interview at Queen’s Park advocating for improved wound care for people with diabetes in Ontario should not be surprising. The researcher and vascular surgeon at St. Michael’s Hospital has become a passionate voice for the need to stem the tide of amputations related to diabetes.

de Mestral, who is a Diabetes Action Canada researcher, recently co-led a study, published in the Canadian Medical Association Journal (CMAJ), that showed a rise in the number of diabetes-related lower limb amputations in Ontario. While this does correspond to the increasing number of type 2 diabetes diagnoses in the province, the results were still alarming.

“It’s discouraging,” says de Mestral, “because so many of those amputations could have been prevented. We know that [type 2] diabetes is increasing and that’s likely what’s driving this.” Part of the solution, he believes is to prevent diabetes and better control blood sugar in those living with the disease, but he also sees a need for improvements in foot care.

Unlike in other complications of diabetes, like eye disease or kidney damage, there is not always coordinated care of foot complications. Patients may not be able to access a chiropodist or podiatrist without paying additional fees and their family doctor may be too busy to provide the detailed regular foot care checks that Canadian and international guidelines recommended for patients with diabetes. This means that a patient may not get the care they need until far too late, when a wound that could easily have been treated requires a much more invasive approach.

For de Mestral, a vascular surgeon, a large part of his job is dealing with poor circulation in a patient’s legs. He estimates that he and his colleagues at St. Michael’s Hospital alone see a dozen patients a week with a limb-threatening problem, most often related to diabetes. “We know that in Canada over 80% of amputations are related to diabetes, often in conjunction with poor circulation, known as peripheral artery disease. And what I see too often is that patients are struggling to get the right care at the right time in order to prevent amputation. He is hopeful that by raising awareness among patients and scaling up the success of multi-disciplinary foot care teams involving doctors, podiatrists, chiropodists and nurses, diabetic foot ulcers can be diagnosed and treated earlier in order to ensure they heal properly, rather than result in amputation.

There is also a need to better understand the issues behind rising numbers of amputations and to develop an evidence-basis for prevention efforts across Canada. This is why the Government of Ontario recently awarded de Mestral an Early Researcher Award to support his work. “That award is allowing me to hire graduate students and other research team members to really focus on the problem of amputation in patients with diabetes and peripheral artery disease,” he says. “We’re first looking at better characterizing the burden of disease, with studies like the one that came out in CMAJ looking at rates of amputation over time in addition to identifying regions and patient groups with high rates of limb loss across the province.” de Mestral’s team will also be analyzing  the economic impact of amputation and  existing prevention efforts across the province in order to better understand where improvements can be made.

While he hopes to have an impact on patient lives through his research, de Mestral also knows that practical advice can be helpful for those living with diabetes who might be concerned about amputation risk. “The single most important message to anyone with diabetes is check your feet every day,” he says. “Or have a family member or caregiver help with this.” He suggests looking for wounds, redness, areas that might be tender or painful and discoloration of the toes – if you detect any of those things, go to your family doctor right away. “We know that people with diabetes have a 30% lifetime chance of getting a wound on their foot. Thankfully, and if a wound is recognized early, the chance of healing it is over 80%.”

Diabetes Canada offers a helpful checklist for those with diabetes to help support better foot care. You can access it on their website.

For more information about the work Diabetes Action Canada is doing in this area, visit the section of our website on Foot Care and Prevention of Amputation.

Story by Krista Lamb

 

Prendre les bonnes mesures pour prévenir les amputations liées au diabète

 

Que le Dr Charles de Mestral ait passé la matinée précédant notre entrevue à Queen’s Park, à promouvoir des soins améliorés des plaies pour les personnes vivant avec le diabète en Ontario ne devrait pas être surprenant. En effet, le chercheur et chirurgien vasculaire à l’Hôpital St. Michael s’est fait le porte-parole passionné de la nécessité d’endiguer la vague d’amputations liées au diabète.

Chercheur à Action diabète Canada, le Dr de Mestral a récemment codirigé une étude, publiée dans le Canadian Medical Association Journal (CMAJ), qui révèle une hausse du nombre d’amputations de membres inférieurs liées au diabète en Ontario. Même si ce résultat s’inscrit dans le contexte de la hausse du nombre de diagnostics de diabète de type 2 dans cette province, les résultats n’en demeurent pas moins alarmants.

« C’est décourageant, dit le Dr de Mestral, parce que beaucoup de ces amputations auraient pu être évitées. Nous savons que le diabète [de type 2] est en progression et qu’il est la cause probable de ce phénomène. » À son avis, la solution passe par la prévention du diabète et par un meilleur contrôle du taux de glycémie chez les personnes diabétiques, mais aussi par l’amélioration des soins des pieds. Contrairement aux autres complications du diabète, comme les maladies oculaires ou les dommages aux reins, les soins prodigués en cas de complications touchant les pieds ne sont pas toujours coordonnés. Il est possible que les patients doivent payer pour consulter un podologue ou un podiatre et que leur médecin de famille soit trop occupé pour examiner régulièrement leurs pieds, comme le recommandent les directives canadiennes et internationales pour les patients diabétiques. Ainsi, le patient reçoit les soins nécessaires seulement lorsqu’il est beaucoup trop tard, au moment où une plaie qui aurait pu être traitée facilement nécessite une approche beaucoup plus invasive.

Le Dr de Mestral, qui est chirurgien vasculaire, traite principalement la mauvaise circulation sanguine dans les jambes de ses patients. Il estime que, à eux seuls, lui et ses collègues de l’Hôpital St. Michael voient chaque semaine une douzaine de patients aux prises avec un problème mettant en danger un membre. La plupart du temps, ce problème est lié au diabète. « Nous savons qu’au Canada plus de 80 % des amputations sont associés au diabète, qui va souvent de pair avec une mauvaise circulation. Cette affection s’appelle la maladie vasculaire périphérique. Je vois trop souvent des patients qui luttent pour obtenir des soins adéquats à temps pour prévenir l’amputation. » Il a bon espoir que la sensibilisation des patients et l’intensification du succès des équipes de soins des pieds multidisciplinaires, formées de médecins, de podiatres, de podologues et d’infirmières, mèneront au diagnostic et au traitement précoces des ulcères du pied chez les personnes diabétiques afin qu’elles puissent guérir correctement au lieu de se faire amputer.

Il faut aussi une meilleure compréhension des problèmes associés à la hausse du nombre d’amputations et la collecte de données probantes justifiant des efforts de prévention partout au Canada. C’est pourquoi le gouvernement de l’Ontario a récemment octroyé au Dr de Mestral une Bourse de nouveau chercheur pour soutenir ses travaux. « Cette bourse me permet d’engager des étudiants de cycle supérieur et d’autres chercheurs pour étudier le problème de l’amputation chez les patients atteints de diabète et de maladie vasculaire périphérique, dit-il. Nous cherchons tout d’abord à mieux caractériser le fardeau de la maladie, grâce à des études comme celle publiée par le CMAJ qui se penche sur le taux d’amputation dans le temps en plus de cerner les régions et les groupes de patients présentant les taux les plus élevés de perte de membres de la province. » L’équipe du docteur analysera aussi les conséquences économiques de l’amputation et les efforts de prévention qui sont faits en Ontario à l’heure actuelle dans le but de mieux comprendre où des améliorations peuvent être apportées.

Bien qu’il espère que ses recherches amélioreront la vie des patients, le Dr de Mestral sait que les conseils pratiques peuvent également être utiles pour les personnes vivant avec le diabète qui craignent l’amputation. « Mon message le plus important pour toute personne vivant avec le diabète est : examinez vos pieds tous les jours ou demandez à un proche ou à un aidant de le faire pour vous. Recherchez des plaies, des rougeurs, des zones sensibles ou douloureuses et la décoloration des orteils. Si vous détectez l’un de ces signes, consultez immédiatement votre médecin de famille. Les personnes atteintes de diabète ont 30 % de chances de développer une plaie au pied au cours de leur vie. Heureusement, si la plaie est détectée tôt, les chances de guérison sont de plus de 80 %. »

Diabète Canada offre aux personnes diabétiques une liste pratique pour de meilleurs soins des pieds. Vous pouvez y accéder sur le site Web de l’organisme.

Pour de plus amples renseignements sur les travaux menés par Action diabète Canada dans ce domaine, visitez la section de son site Web consacrée aux soins des pieds et à la prévention de l’amputation d’un membre inférieur.

 

An economic analysis of the tele-retina screening program

Tele-retina Screening test being done on patient

 

The latest issue of the Canadian Journal of Ophthalmology features a paper from Diabetes Action Canada researcher Dr. Valeria Rac looking at the economic analysis of the tele-retina screening program for diabetic retinopathy.

Dr. Rac and her team concluded that this program is a more cost-effective means of screening for diabetic retinopathy than the current standard form of care for urban and rural individuals with diabetes who are at risk of being under-screened.

You can read the full paper on the Canadian Journal of Ophthalmology website.

Learn more about Diabetes Action Canada’s Tele-Retina Screening Program here.

 

Diabetes Action Canada is building a Digital Patient Engagement Network

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Our Patient Partners, who live with T1D, have made it very clear that they feel disconnected from current clinical trials, researchers and research outcomes. In parallel, researchers struggle to connect with this diverse and geographically dispersed population. This disconnect is an impediment to recruitment to clinical trials and research, thereby hindering scientific advances that could greatly inform treatment pathways and improve health outcomes.

To bridge this gap, the Diabetes Action Canada iT1D Program is developing an opt-in digital platform for the purpose of recruiting, contacting and regularly engaging persons interested in contributing to clinical research to accelerating scientific advances that could greatly inform treatment pathways and improve health outcomes in T1D.  At time of registration those living with T1D will be asked to complete a very short questionnaire to determine their demographics, location and research interests as well as provide consent to be contacted for clinical research opportunities. Once enrolled, those living with T1D can explore clinical research opportunities and provide their opinion to help set targeted research priorities that address their specific needs.  Conversely, researchers will be able to directly engage members of the T1D Community in clinical research opportunities and in determining research questions for patient-oriented research projects.   To makes this platform truly patient-centred we have undergone an extensive co-design process with members of the T1D Community, which included large workshops with the T1D ThinkTank and Diabetes Action Canada Patient Partners, smaller working groups and one-on-one interviews.  This rigorous co-design has led us to a product that will present clinical research information in an easy to understand dashboard that presents information in a way that is easy to interpret and easy to determine if a clinical research study is a good match for the user.  The design of this digital patient engagement network, soon to be renamed, is nearly complete with an expected launch date in Q1 of 2020

Type 1 Diabetes TrialNet: A Type-1 Diabetes Research Network Screening Relatives of people with T1D and Innovative Clinical Studies

In our June 2019 newsletter we featured the ground-breaking news that the anti-CD3 antibody, Teplizumab, originally intended to protect new organs after kidney transplantation, could deactivate T cells that are targeting insulin producing beta cells.  This in turn could delay the onset of type-1 diabetes for those with close family members living with the condition.  What we didn’t mention was that those who participated in this study were recruited through the international research network called TrailNet.  TrialNet, funded by the National Institute for Health, offers risk screening for relatives of people living with type-1 diabetes and conducts innovative clinical studies to preserve insulin production.  The TrialNet Network includes 25 Clinical Centres and over 200 affiliated sites across North America, Europe, UK and Australia.  In Canada, the coordinating site operates out of the Hospital for Sick Children in Toronto and has 10 affiliated sites in Vancouver, Edmonton, Calgary, Winnipeg, London, Saskatchewan, Hamilton, Ottawa, Halifax and St. John’s.   Together these sites offer free Pathway to Prevention screening to evaluate the personal risk of developing T1D for relative of those living with the disease.   This minimally invasive blood test can detect autoantibodies that are predictive of developing T1D and those with these autoantibodies will have an opportunity to be monitored to ensure that if disease progression were to occur, that acute DKA and other complications are avoided.  Furthermore, those at risk of developing T1D can participate in prevention and insulin preservation trials to contribute to ground-breaking research, like the Teplizumab trial.  We are excited to be working collaboratively with TrialNet as Diabetes Action Canada develops our digital patient and researcher platform to connect those living with T1D with clinical research opportunities.  For more information on TrialNet you can visit their site here.

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Tele-Retina Screening Program in the News

 

Tele-retina Screening test being done on patient

Recently, the Diabetes Action Canada Tele-Retina Screening Program was featured in the media.

Dr. Michael Brent was interviewed for a segment on CTV News specifically about this program. He also appeared on the Diabetes Canada Podcast to discuss this and other programs related to diabetic retinopathy research in Canada.

Diabetes Action Canada is working to prevent diabetic retinopathy, the leading cause of blindness in adults under 65 years of age, through accessible screening methods and advanced technology.

Learn more about our work in the area of diabetic retinopathy.

Watch the CTV News segment.

Listen to Dr. Michael Brent on the Diabetes Canada Podcast. 

 

 

Patient-Oriented Research in the Spotlight for Diabetes Awareness Month

Photos of Diabetes Action Canada Patient Partners

November is Diabetes Awareness Month, which is an opportunity for Diabetes Action Canada to highlight the organization’s work in developing patient- and research-informed health care delivery that is accessible to all and designed to prevent diabetes and its related complications.

Diabetes Action Canada is part of the Canadian Institutes for Health Research Strategic Patient-Oriented Research (SPOR) program dedicated to fully integrating patients into the health interventions research process.

“Researchers and health care professionals develop programs or strategies aimed at helping those living with diabetes, using all of their professional skills and knowledge. But, often, they fail to consider the realities of a day-to-day life with diabetes, which in turn leads to less impact for the project,” says Dr. Gary Lewis, Scientific Co-Lead at Diabetes Action Canada. “By incorporating the lived experience and opinions of patients who assist us in co-designing our research programs, we are able to develop solutions that meet the needs of the patient, address major barriers in access to health care, and improve the success of implementation.”

Diabetes Action Canada has developed multiple programs with their patient partners that demonstrate the value of this critically important collaboration in developing successful health care interventions.

“From increased access to screening for diabetic retinopathy (eye damage), to better support programs for seniors with diabetes, to improving the resilience and wellness of Indigenous youth to prevent diabetes, we have established understanding of how to better meet the needs of persons living with diabetes.” says Dr. Catharine Whiteside, Executive Director of Diabetes Action Canada. “Our mission is to improve patient experience, population outcomes and health professional experience, and to reduce health care costs related to diabetes.”

Diabetes Action Canada has so far supported more than 40 research projects, including:

  • The creation of the first National Diabetes Repository, a secure platform that contains anonymous information from more than 110,000 individuals with diabetes from several provinces. This repository allows researchers access to information that is used to investigate diabetes-related disease risk factors such as high blood pressure and high cholesterol, and design interventions to improve outcomes. There is no identifying information in the data, which is managed securely, and use is approved by a team of patient partners and health professionals who have set out specific guidelines for when and how this information can be used for research.
  • The ongoing development of a tele-retina screening program, which is designed to increase access to eye exams for people living with diabetes. This approach is proven effective and cost-effective for identifying previously undiagnosed, vision-threatening diabetes-related eye disease in high-risk populations who have been shown to have lower rates of screening. Early detection of diabetic retinopathy and treatment would eliminate diabetes as the number one cause of blindness in working age Canadians.
  • Research led by Diabetes Action Canada members showed an increase in diabetes-related amputations in Ontario over the last ten years. One of the most feared complications of diabetes is foot ulcers related to loss of nerve function and peripheral vascular disease, that could in some cases lead to limb amputation. Persons with diabetes want interventions that remove barriers and better support their day-to-day needs, including regular access to chiropodists to more effectively prevent and treat foot ulcers. The Diabetes Action Canada funded program makes this access possible—working with experts and patients to reduce amputation risk.

“Diabetes Action Canada has established a collaborative community with patient partners working directly with researchers and health professionals” says Whiteside.  “We anticipate outcomes that will transform the health trajectory for all Canadians with diabetes at risk for complications.”

Visit Diabetes Action Canada’s website and follow along on Twitter to learn more about these programs during Diabetes Awareness Month.

For more information, contact:

Krista Lamb, Communications Director
kristalamb@gmail.com
647-403-5627
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. We focus 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 provincial governments to plan, execute and evaluate these research projects so we can improve patient outcomes and experiences.

Dr Charles De Mestral Receives an Ontario Early Career Researcher Award

Congratulations to Dr Charles de Mestral for being awarded an Ontario Early Researcher Award (ERA) for his proposal entitled: Regional Foot Core and Amputation Prevention Pathways For All Ontarians.

Dr. de Mestral is a Surgeon-scientist at St. Michael’s Hospital & Unity Health Toronto and an Assistant Professor of Surgery at the University of Toronto. The Early Researcher Awards program helps new researchers working at publicly funded Ontario research institutions, in a variety of academic fields, build their research teams. The program is funded by the Ontario Ministry of Economic Development, Job Creation and Trade. This award (S190,000 over 5 years) will support research on foot care and amputation prevention for people with diabetes or peripheral artery disease in Ontario.

The complete press release can be found  Here

Bourses de recherche postdoctorale du groupe de la formation et du mentorat du réseau Action diabète Canada 2019-2021

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Au mois d’avril, le programme de la formation et du mentorat d’Action diabète Canada a lancé un nouveau concours de bourses postdoctorales. Huit demandes ont été reçues et un comité d’évaluation composé de chercheurs et de patients partenaires a été mise en place pour entamer le processus de sélection.Cette année, le groupe de la formation et du mentorat octroiera 4 bourses de recherche postdoctorale de 50 000 $ par an pour une période de deux ans. Nous sommes heureux d’annoncer les noms des récipiendaires des bourses du Concours de bourses de recherche postdoctorale 2019-2021.

Ruth Ndjaboue
Un programme de recherche à plusieurs volets, initié par le patient pour améliorer la communication des risques dans les soins du diabète – Université Laval, Superviseure : Holly Witteman; Co-superviseure : Sharon Straus

Bhavadharini Balaji
Explorer la faisabilité d’une application de santé mobile pour la gestion et le suivi des femmes atteintes de diabète sucré gestationnel (DSG) – Women’s College Research Institute, Women’s College Hospital, Superviseure : Lorraine Lipscombe

Radhouene Doggui
Évaluation de l’impact des systèmes de santé primaires sur la gestion à long terme du contrôle glycémique : une première étude longitudinale menée auprès de la population diabétique du Nouveau-Brunswick –  Centre de formation médicale du Nouveau-Brunswick, Superviseur : Mathieu BélangerSupervisor

Stephanie Read
Communication du risque de diabète de type 2 chez les femmes enceintes atteintes de diabète gestationnel – Women’s College Research Institute, Women’s College Hospital, Superviseure : Lorraine Lipscombe

Félicitations aux récipiendaires du groupe de la formation et du mentorat d’ADC et bon succès avec vos projets de recherche!

DAC Training and Mentorship Postdoctoral Fellowship Awards 2019-2021

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In April, the Diabetes Action Canada Training and Mentoring Program launched a new Postdoctoral Fellowship Competition. A total of 8 applications were received and an evaluation committee comprised of researchers and patient partners was assembled for the adjudication process.This year, the Training and Mentoring Group will be granting 4 Postdoctoral Fellowship Awards of $50,000/year for a period of two years. We are pleased to announce the successful recipients of the fellowship awards for this years’s Postdoctoral Fellowship Awards Competition 2019-2021

Ruth Ndjaboue
A multipronged, patient-initiated research program to improve risk communication in diabetes care – Université Laval, Supervisor: Holly Witteman; Co-supervisor Sharon Straus

Bhavadharini Balaji
Exploring the feasibility of a mobile health application for management and follow-up of women with gestational diabetes mellitus (GDM) – Women’s College Research Institute, Women’s College Hospital, Supervisor: Lorraine Lipscombe.

Radhouene Doggui
Assessment of primary healthcare systems impact on long-term management of glycemic control: A first longitudinal study conducted among New Brunswick diabetic population –  Centre de formation médicale du Nouveau-Brunswick, Supervisor: Mathieu Bélanger

Stephanie Read
Communicating type 2 diabetes risk in pregnant women with gestational diabetes – Women’s College Research Institute, Women’s College Hospital, Supervisor: Lorraine Lipscombe.

Congratulations to all the DAC Training and Mentoring Program Awardees and good luck with your research projects!

Revolutionize How we Use Health Data

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National Diabetes Repository

Diabetes Action Canada has successfully launched the first National Diabetes Repository in Canada.  This novel, secure analytics platform designed and implemented by Dr. Michelle Greiver (University of Toronto) and colleagues now contains information from over 110,000 individuals with diabetes in Alberta, Manitoba, Ontario, Newfoundland and Quebec, along with the same number of age-matched non-diabetic controls.  The National Diabetes Repository was created through collaboration with the Canadian Primary Care Sentinel Surveillance Network https://cpcssn.ca , using de-identified and encrypted primary care electronic medical records (EMRs) data that can be accessed by approved Diabetes Action Canada investigators for population-based and observational studies.  The repository has since evolved to accept patient reported outcomes and experience measures directly from patients using digital tablets that are directly connected to EMRs.  Data from provincial administrative data sources can be linked to individuals in each province to provide social determinants of health and outcomes data.  To facilitate data integration, data sharing agreements are anticipated with the provincial organization members of the SPOR National Data Platform research program.

In collaboration with the Fields Institute Centre for Quantitative Analysis and Modelling (Fields-CQAM), and the Vector Institute for Artificial Intelligence and investigators from the Dalla Lana School of Public Health from the University of Toronto, we held a two-day data workshop June 17th and 18th 2019.  Trainees and established researchers applied advanced analytics to the de-identified dataset within our National Diabetes Repository. The exercise provided much needed insights into the feasibility of using advanced mathematic modelling and artificial intelligence learning models on Canadian EMR data in a secure high-performance computing environment.  Using two testing environments, the results of this workshop showed that our data can be used for: 1) machine learning to predict patient responses to SGLT2 Inhibitors with high accuracy based on their health records; and, 2) artificial intelligence to identify the characteristics of sub-group patients, including their medication history, that are associated with different HbA1c trajectories.  Taken together, we were able to demonstrate that artificial intelligence and advanced analytics could be applied to our dataset to provide useful information for both patients and physicians in selecting treatment options to manage their condition.

Révolutionner la façon dont nous utilisons les données sur la santé

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Répertoire national sur le diabète

Action diabète Canada a lancé avec succès le premier Répertoire national sur le diabète au Canada. Cette plateforme analytique sécurisée innovante a été conçue par la Dre Michelle Greiver (Université de Toronto) et des collègues. Elle contient maintenant des données sur plus de 110 000 personnes vivant avec le diabète en Alberta, au Manitoba, en Ontario, à Terre‑Neuve‑et‑Labrador et au Québec, ainsi que des données sur le même nombre de témoins non diabétiques appariés suivant l’âge. Le Répertoire national sur le diabète a été créé en collaboration avec le Réseau canadien de surveillance sentinelle en soins primaires (http://rcsssp.ca/) à partir de données anonymisées et chiffrées provenant de dossiers médicaux électroniques documentant des soins de base, auxquelles les chercheurs accrédités par Action diabète Canada peuvent accéder afin de réaliser des études fondées sur des populations et des observations. Le Répertoire a depuis évolué pour intégrer les résultats des soins de santé et des expériences des patients fournis directement par ces derniers à partir de tablettes numériques directement reliées aux dossiers de santé électroniques. Des données administratives provenant de sources provinciales peuvent être associées aux personnes dans chaque province pour fournir des déterminants sociaux liés à la santé et des données sur les résultats des soins. Dans le but de faciliter l’intégration des données, on prévoit conclure des ententes de partage des données avec les organismes provinciaux membres du programme de recherche sur la plateforme nationale de données SRAP.

En collaboration avec le Fields Institute Centre for Quantitative Analysis and Modelling (Fields-CQAM), l’Institut Vecteur pour l’intelligence artificielle et des chercheurs de la Dalla Lana School of Public Health de l’Université de Toronto, nous avons organisé un atelier de deux jours sur les données les 17 et 18 juin 2019. Des stagiaires et des chercheurs titulaires ont appliqué des méthodes avancées d’analyse à des jeux de données anonymisées tirées du Répertoire national sur le diabète. Cette analyse a fourni des pistes précieuses quant à la faisabilité de l’application de méthodes évoluées de modélisation mathématique et de modèles d’apprentissage par intelligence artificielle sur des données provenant de dossiers de santé électroniques canadiens, dans un environnement informatique haute performance sécurisé. À l’aide de deux environnements d’essai, les résultats de cet atelier ont montré que nos données peuvent être utilisées pour : 1) permettre l’apprentissage machine afin de prédire avec une grande précision la réaction des patients aux inhibiteurs de SGLT2 à partir de leurs dossiers de santé; 2) permettre l’utilisation de l’intelligence artificielle afin de déterminer des caractéristiques de sous-groupes de patients, y compris leur historique de médication, associées à différentes trajectoires HbA1c. Globalement, nous avons été en mesure de montrer que l’intelligence artificielle et l’analytique avancée peuvent être appliquées à notre base de données dans le but de fournir des renseignements utiles aux patients et aux médecins, en vue de la sélection d’options de traitement pour gérer l’état de santé des patients.

Diabetes Action Canada to have its first External Review

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As Diabetes Action Canada enters its fourth year of funding, it is necessary to critically evaluate our programs and progress to plan for the next phase of our SPOR Network.  We are already well underway in conducting an internal network evaluation, led by Dr. Valeria Rac at the THETA Collaborative, University of Toronto and University Health Network,  and Dr. Mathieu Ouimet at the Université Laval.  The Diabetes Action Canada leadership and Steering Council have invited three reviewers from Canada and the USA to evaluate our research Network in November 2019, that will provide an independent perspective about our performance.  The reviewers will receive  a summary of our achievements against stated goals as well as our assessment of barriers to success. In addition, they will obtain an initial report of our network evaluation detailing the growth and impact of our internal and external collaborations.  We anticipate that this external review will result in important advice about strategic planning for our next phase of Diabetes Action Canada and possible SPOR Network renewal.  Below is a list of the four external reviewers and links to their biographies.

  • Dr Cindy Bell, PhD

Executive Vice President, Corporate Development, Genome Canada

Mother of two daughters with T1D

https://www.genomecanada.ca/en/about/governance/management-team/cindy-bell

  • Dr. Diane Bild, MD, MPH

Acting Chief Science Officer

Patient-Centered Outcomes Research Institute (PCORI) – USA

https://www.pcori.org/people/diane-e-bild-md-mph

  • Dr. Hertzel Gerstein, MD, MSc, FRCPC

Professor of Medicine, McMaster University and Hamilton Health Sciences

Population Health Research Institute Chair in Diabetes

Director, Division of Endocrinology & Metabolism, McMaster University

Director, Diabetes Care and Research Program,

Deputy Director, Population Health Research Institute

https://fhs.mcmaster.ca/medicine/endocrinology/faculty_member_gerstein.htm

  • Dr. Louise Potvin

Director, Institute for Public Health Research,

Professor, Department of Social and Preventive Medicine, School of Public Health,

University of Montreal

http://www.medsp.umontreal.ca/IRSPUM_DB/bottin.asp?no=150

Le programme de formation et de mentorat d’Action diabète Canada annonce ses prix de mentorat pour 2019!

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L’équipe du programme de formation et de mentorat pour favoriser la recherche d’Action diabète Canada est heureuse d’annoncer le choix des titulaires des bourses 2019-2020 pour les stages étudiants intercentres pour la recherche axée sur le patient portant sur le diabète et ses complications. Félicitations aux titulaires, qui ont obtenu chacun une bourse de 10 000 $ pour un an de travaux.

Les bourses pour les stages étudiants intercentres pour la recherche axée sur le patient portant sur le diabète et ses complications favorisent le réseautage et l’intégration optimale de stagiaires à Action diabète Canada et à la communauté canadienne des chercheurs sur le diabète. Des chercheurs faisant partie de notre réseau ont proposé des projets collaboratifs devant être réalisés par des stagiaires qui termineront leur formation dans un centre de recherche à l’extérieur de l’établissement où travaillent les chercheurs principaux, en collaboration avec un chercheur affilié à Action diabète Canada ou un autre chercheur du réseau SRAP.

Voici les titulaires des bourses et leur affiliation

  1. Celia Laur – Chercheuse universitaire postdoctorale, Women’s College Research Institute, Women’s College Hospital, Toronto
    • Chercheur principal : le Dr Noah Ivers – Titulaire de la chaire de recherche du Canada en mise en œuvre de pratiques fondées sur des données probantes, Women’s College Research Institute, Women’s College Hospital et Université de Toronto
    • Collaboratrice dans un autre centre : la Dre Lauren Ball – Menzies Health Institute, Queensland, Université Griffith, Brisbane (Australie)
  2. Heather Kewageshig – Ph. D., faculté de soins infirmiers, spécialisation collaborative en santé des Autochtones, Dalla Lana School of Public Health, Université de Toronto
    • Chercheuse principale : Monica Parry – Université de Toronto
    • Collaboratrice dans un autre centre : Marie-Claude Tremblay – Université Laval