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Author: Linxi Mytkolli

Diabetes Action Canada is building a Digital Patient Engagement Network

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

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

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

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

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Tele-Retina Screening Program in the News

 

Tele-retina Screening test being done on patient

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

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

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

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

Watch the CTV News segment.

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

 

 

Patient-Oriented Research in the Spotlight for Diabetes Awareness Month

Photos of Diabetes Action Canada Patient Partners

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

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

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

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

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

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

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

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

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

For more information, contact:

Krista Lamb, Communications Director
kristalamb@gmail.com
647-403-5627
About Diabetes Action Canada

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

Dr Charles De Mestral Receives an Ontario Early Career Researcher Award

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

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

The complete press release can be found  Here

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

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

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

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

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

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

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

DAC Training and Mentorship Postdoctoral Fellowship Awards 2019-2021

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

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

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

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

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

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

Revolutionize How we Use Health Data

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National Diabetes Repository

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

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

Révolutionner la façon dont nous utilisons les données sur la santé

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Répertoire national sur le diabète

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

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

Diabetes Action Canada to have its first External Review

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

  • Dr Cindy Bell, PhD

Executive Vice President, Corporate Development, Genome Canada

Mother of two daughters with T1D

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

  • Dr. Diane Bild, MD, MPH

Acting Chief Science Officer

Patient-Centered Outcomes Research Institute (PCORI) – USA

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

  • Dr. Hertzel Gerstein, MD, MSc, FRCPC

Professor of Medicine, McMaster University and Hamilton Health Sciences

Population Health Research Institute Chair in Diabetes

Director, Division of Endocrinology & Metabolism, McMaster University

Director, Diabetes Care and Research Program,

Deputy Director, Population Health Research Institute

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

  • Dr. Louise Potvin

Director, Institute for Public Health Research,

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

University of Montreal

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