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.
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 pagewith 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.
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.
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.
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.”
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:
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
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.
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.
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
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.
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.
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.
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.
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
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.
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.
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!
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
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.
Novembre est le mois de la sensibilisation au diabète, une occasion pourAction diabète Canadade 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. »
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’unprogramme 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 révèlentune 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.
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.
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
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 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.
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:
“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
“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.
“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.
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.
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.
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.
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
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 lesite Web de l’organisme.
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.
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.
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
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.
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.
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.”
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.
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.
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!
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!
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.
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.
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.
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
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)
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
Diabetes Action Canada Training and Mentoring Enabling Research Program is pleased to announce the 2019-20 awardees for the Patient-Oriented Research Inter-centre Trainee Internship Awards. Congratulation to the awardees who each received $10,000 for a period of one year!
The Patient-Oriented Research Inter-centre Trainee Internship Awards in Diabetes and its Complications promotes networking and optimal integration of trainees into Diabetes Action Canada and the Canadian diabetes research community. Investigators within our Network proposed collaborative projects conducted by trainees who will complete their training in a research centre outside the Investigator’s institution with a collaborating Diabetes Action Canada or other SPOR Network Investigator.
The awardees and their affiliations are as follows:
Celia Laur – Postdoctoral Research Fellow, Women’s College Research Institute, Women’s College Hospital, Toronto
Principal Investigator: Dr. Noah Ivers – Canada Research Chair in Implementation of Evidence-Based Practice, Women’s College Research Institute, Women’s College Hospital and University of Toronto
Collaborator in another centre: Dr. Lauren Ball – Menzies Heath Institute, Queensland, Griffith University, Brisbane, Australia
Heather Kewageshig – PhD, Faculty of Nursing, Collaborative Specialization in Indigenous Health, Dalla Lana School of Public Health, University of Toronto
Principal Investigators: Monica Parry – University of Toronto
Collaborator in another centre: Marie-Claude Tremblay – Université Laval
Diabetes Action Canada’s National Diabetes Repository launched its inaugural grant competition in April 2019. Our investigators were invited to submit proposals to address meaningful patient-oriented research questions using the Secure Analytic Virtual Environment (SAVE) of the National Diabetes Repository and three research proposals awarded $15,000 each. Applicants submitted their proposals through our new online researcher portal www.repository.diabetesaction.ca. Our Research Governing Committee and Scientific Advisory Committee reviewed the proposals and selected projects based on Diabetes Action Canada priorities including what matters most to persons living with diabetes, innovative use of data/techniques, and team-based research.
Grant Recipients:
Dr. Alanna Weisman and Dr. Bruce Perkins, University of Toronto
This research will determine if insulin pump use differs in adults (>18 years of age) between provinces due to differences in government funding, and whether this disproportionately affects people of lower socioeconomic status. The results will provide evidence to advocate for government funding for insulin pump therapy universally across Canada.
Dr. Braden O’Neill – North York General Hospital/University of Toronto
People with schizophrenia are at markedly increased risk of death from cardiovascular disease and are more likely to have diabetes than those without this condition. Diabetes is one of the most important risk factors for developing cardiovascular disease and causes substantial morbidity as a result of macrovascular and microvascular complications if inadequately treated. This proposal will examine the quality of care provided to patients with and without schizophrenia and with diabetes across multiple provinces. This research addresses an important health equity issue around the care of a vulnerable population. Results from this study will guide further work to develop and implement interventions and modifications to health service provision in order to improve care for people with diabetes and schizophrenia.
Professor Huaxiong Huang and Ms. Neda Aminnejad, York University and the Fields Institute for Research in Mathematical Sciences
This project aims to apply advanced mathematical modelling to the data in the National Diabetes Repository. The model has two main objectives: to predict the entire trajectory for the progression of type 2 diabetes along with its complications and to segment the type 2 diabetes patients into three risk categories to allow for appropriate intervention. It will also highlight if a group of comorbidities or the patient’s health condition could potentially worsen. Predicting complications of type 2 diabetes before they occur can lead to prevention and significantly reduce the emotional and financial toll on patients and their families.
Diabetes Action Canada’s National Diabetes Repository launched its inaugural grant competition in April 2019. Our investigators were invited to submit proposals to address meaningful patient-oriented research questions using the Secure Analytic Virtual Environment (SAVE) of the National Diabetes Repository and three research proposals awarded $15,000 each. Applicants submitted their proposals through our new online researcher portal www.repository.diabetesaction.ca. Our Research Governing Committee and Scientific Advisory Committee reviewed the proposals and selected projects based on Diabetes Action Canada priorities including what matters most to persons living with diabetes, innovative use of data/techniques, and team-based research.
Grant Recipients:
Dr. Alanna Weisman and Dr. Bruce Perkins, University of Toronto
This research will determine if insulin pump use differs in adults (>18 years of age) between provinces due to differences in government funding, and whether this disproportionately affects people of lower socioeconomic status. The results will provide evidence to advocate for government funding for insulin pump therapy universally across Canada.
Dr. ADD FIRST NAME O’Neil ADD University affiliation
People with schizophrenia are at markedly increased risk of death from cardiovascular disease and are more likely to have diabetes than those without this condition. Diabetes is one of the most important risk factors for developing cardiovascular disease and causes substantial morbidity as a result of macrovascular and microvascular complications if inadequately treated. This proposal will examine the quality of care provided to patients with and without schizophrenia and with diabetes across multiple provinces. This research addresses an important health equity issue around the care of a vulnerable population. Results from this study will guide further work to develop and implement interventions and modifications to health service provision in order to improve care for people with diabetes and schizophrenia.
Professor Huaxiong Huang and Ms. Neda Aminnejad, York University and the Fields Institute for Research in Mathematical Sciences
This project aims to apply advanced mathematical modelling to the data in the National Diabetes Repository. The model has two main objectives: to predict the entire trajectory for the progression of type 2 diabetes along with its complications and to segment the type 2 diabetes patients into three risk categories to allow for appropriate intervention. It will also highlight if a group of comorbidities or the patient’s health condition could potentially worsen. Predicting complications of type 2 diabetes before they occur can lead to prevention and significantly reduce the emotional and financial toll on patients and their families.
The Banting and Best Diabetes Centre’s (BBDC’s) Knowledge Translation and Optimizing Care Models Program and Diabetes Pharmacists Network, recently released the second edition of their highly-regarded BBDC Guidebook on Diabetes Management.
Led by Dr. Lori MacCallum, a Diabetes Action Canada researcher, the latest edition incorporates recommendations from Canadian clinical practice guidelines in diabetes, hypertension, lipids and the use of antiplatelet agents. It also includes information health care providers need to know to help them implement these recommendations, including detailed information on over 100 medications, clinical pearls, helpful tips for educating patients using motivational interviewing techniques and for managing common side effects.
Recently, a study led by Diabetes Action Canada researcher Charles de Mestral from St. Michael’s Hospital in Toronto was released in CMAJ.
This study shows lower-limb amputation rates for those with diabetes in Ontario are rising, which highlights the need for improvements in care and access to resources in order to slow this progression.
“This study makes clear that healthcare professionals and policy makers need to work together to uncover the root causes of this increase and develop solutions to improve outcomes for people living with diabetes,” says Dr. Gary Lewis, Scientific Co-Lead for Diabetes Action Canada. “While this rise may seem small when compared against the overall increase in type 2 diabetes diagnosis in the province, it hammers home the need to be vigilant about foot care. Amputation is one of the most dreaded potential consequences of diabetes and it is critical we continue to advocate for improved outcomes in this area.”
While this study does not provide a clear reason for why this increase is occurring, it does remind us that there are things clinicians and patients can do to help in lowering the risk of a diabetes-related amputation.
Dr. Bruce Perkins’ provides a commentary in the same issue of CMAJ, which looks at some of the important takeaways for clinicians from this study. This includes renewed efforts to understand the underlying causes for this rise and to improve on the processes for identifying those at risk and improving preventive care.
For those with diabetes, this study is a reminder of the need to be vigilant about foot care. Amputation is a scary potential complication. However, there are things a patient can do to help decrease the risk:
If you have diabetes, check your feet daily – contact your healthcare professional right away if you see any cuts, sores or signs of infection.
If you have diabetes, it’s critical to get your feet checked regularly by a health care provider.
If your doctor or endocrinologist does not suggest a foot assessment, don’t fear asking them for a referral.
If foot care is difficult to access in your community, ask your health care provider to help you find the resources you need.
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.
Ce symposium annuel conjoint, ayant pour objectif de maintenir les efforts pour améliorer la santé de la population québécoise tant pour les aspects reliés au diabète et aux dyslipidémies que pour ceux reliés aux désordres cardiométaboliques et vasculaires a eu lieu à l’Hôtel Chéribourg, Magog-Orford pour une septième année. Cet évènement soulignant aussi, en février de chaque année, une semaine québécoise francophone réservée à l’éducation sur la santé cardiométabolique, le diabète et l’obésité.
Pendant deux jours, les quatre ambassadeurs scientifiques sélectionnés ont participé aux quatre symposiums regroupant plusieurs thématiques, à la conférence de marque du Dr Bruce Perkins ainsi qu’à l’exposé du Dr Pedro Geraldes, lauréat 2017 du prix Jeune chercheur du Réseau CMDO. Dans le rapport qui suitles, nous donnerons un bref aperçu des sujets traités et présenterons les différents points de vue exprimés par les ambassadeurs sur leur expérience.
This seventh joint annual symposium of SQLNM, CMDO Network and COLosSUS congress, aimed at maintaining the efforts to improve the health of the Quebec population with respect to diabetes, dyslipidemia and cardiometabolic and vascular disorders, took place at the Hôtel Chéribourg, Magog-Orford on February 6-8, 2019. Diabetes Action Canada sent four Patient Partners as Scientific Ambassadors to this event which also highlights the Francophone Quebec week dedicated to education on cardiometabolic health, diabetes and obesity in February each year.
For two days, the scientific ambassadors took part in four symposia which covered several themes related to cardiometabolic health, diabetes and obesity and attended presentations from Dr. Bruce Perkins and Dr. Pedro Geraldes, winner of the 2017 CMDO Network Young Investigator Award. In the report below, we will give a brief overview of the topics covered and present the various points of view expressed by the ambassadors about their experience.
This seventh joint annual symposium of SQLNM, CMDO Network and COLosSUS congress, aimed at maintaining the efforts to improve the health of the Quebec population with respect to diabetes, dyslipidemia and cardiometabolic and vascular disorders, took place at the Hôtel Chéribourg, Magog-Orford on February 6-8, 2019. Diabetes Action Canada sent four Patient Partners as Scientific Ambassadors to this event which also highlights the Francophone Quebec week dedicated to education on cardiometabolic health, diabetes and obesity in February each year.
For two days, the scientific ambassadors took part in four symposia which covered several themes related to cardiometabolic health, diabetes and obesity and attended presentations from Dr. Bruce Perkins and Dr. Pedro Geraldes, winner of the 2017 CMDO Network Young Investigator Award. In the report below, we will give a brief overview of the topics covered and present the various points of view expressed by the ambassadors about their experience.
Cette année, le programme de la formation et du mentorat financera deux bourses de stage intercentre de 10 000 $ chacune pour une période d’un an.
Nous sommes heureux d’annoncer les récipiendaires et leurs affiliations pour la bourse en Recherche axée sur le patient – Stages étudiants intercentres en diabète et ses complications 2019-2020.
Celia Laur – Stagiaire postdoctorale, WIHV, Women’s College Hospital
Heather Kewageshig – Doctorat (en cours), Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Félicitations et bon succès aux récipiendaires des bourses d’Action diabète Canada 2019-2020!
We are pleased to announce the successful recipients of the 2019-2020 Patient-Oriented Research Intercentre Trainee Internship Awards and their affiliations:
1- Celia Laur – Postdoctoral Research Fellow, WIHV, Women’s College Hospital
2– Heather Kewageshig – PhD (in progress), Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Congratulations and good luck to the Diabetes Action Canada 2019-2020 Awardees!
Researchers in Toronto (Bruce Perkins MD) and Montreal (Ahmad Haidar PhD) and their teams have started the “Closed Loop ASSessment 17 (CLASS17)” study investigating how a pill used for the management of type 2 diabetes can help a hybrid closed loop insulin pump system work better to achieve time-in-target blood sugar levels for those with type 1 diabetes. The pill is a type of Sodium-Glucose Linked Transporter (SGLT) inhibitor that lowers blood sugar by increasing the urinary excretion of sugar. The hybrid closed loop system uses a Dexcom sensor, a Tandem insulin pump, and the McGill Artificial Pancreas algorithm run on an Android phone.
En octobre 2018, Diabetes Canada a tenu sa conférence professionnelle annuelle à Halifax, en Nouvelle-Écosse. Action diabète Canada a aidé deux patients partenaires, Doug Mumford et Robert Fenton, en tant qu’ambassadeurs scientifiques, à participer à la conférence de Diabetes Canada et à participer à des séances présentant un intérêt. Nous sommes heureux d’avoir un rapport complet sur leurs expériences à la conférence. Voir ci-dessous pour le rapport complet.
LES THÈMES GÉNÉRAUX QUE LES AMBASSADEURS ONT RETIRÉS DE LA CONFÉRENCE :
Traiter l’esprit ainsi que le corps. La nécessité de traiter l’esprit ainsi que le corps. Et de mesurer l’esprit – en particulier la volonté du patient de changer de comportement en faveur de l’autogestion.
Évaluer la volonté des patients de changer de comportement avant de proposer un plan de traitement.
Faire un suivi auprès de chaque patient – les cliniciens et les éducateurs doivent surveiller la conformité et les résultats.
Les données sont une clé absolue du succès de la gestion du diabète, tant au niveau personnel qu’au niveau de la population.
De véritables soins centrés sur le patient sont essentiels. On parle beaucoup de prise de décision partagée avec le patient et de la nécessité de faire un suivi après les visites initiales. Ceci s’applique
particulièrement aux personnes vivant avec le type 2 qui ont tendance à être vues seulement quelques fois par un centre d’éducation et un endocrinologue. Ensuite le médecin de famille est censé continuer le traitement. Cela ne fonctionne pas très bien.
L’HbA1c est sur le point d’être remplacé par deux chiffres : Durée dans la cible et durée en hypo. Comme ≥ 75 % et ≤ 3 %.
De nouveaux développements dans les systèmes de surveillance de la glycémie et d’administration d’insuline rendent la gestion du diabète plus facile et plus efficace.
L’obésité n’est pas curable et les meilleures pratiques de traitement actuelles ne sont pas évolutives (chirurgie bariatrique et modification du comportement cognitif).
La prévention et le traitement précoce des complications sont cruciaux.
Les guides de pratique clinique 2018 ont été mis à jour pour devenir une application et un site Web. Ils constituent un outil exceptionnel pour les cliniciens, les éducateurs et les patients.
Inspiration : Il n’existe aucune limite à ce que les personnes vivant avec le diabète peuvent être, faire ou accomplir!
