Co-Investigators: Babak Aliarzadeh, Onil Bhattacharyya, Rick Birtwhistle, Gillian Booth, Neil Drummond, Serge Dumont, Jean-Francois Ethier, Julie Gilmour, Ilana Halperin, Noah Ivers, Lisa Jaakkimainen, Peter Juni, Tara Kiran, Lorraine Lipscombe, Donna Manca, Geetha Mukerji, Andrew Paterson, Baiju Shah, Karen Tu, Xiaolin Wei, Rose Yeung
Repository Manager: Conrad Pow
Data Manager: Tao Chen
Project Coordinator: Helena Medeiros
Diabetes Action Canada Using Health Data to Transform Diabetes Management
National Diabetes Repository for secondary use of data
By 2020, over 3 million Canadians (~10% of the population) will have diabetes, with vulnerable populations, including Indigenous Peoples and new immigrants, more likely to be affected. Those living with diabetes have an increased risk for heart disease, stroke, kidney failure, nerve disease, blindness, mental illness, and decreased life expectancy – all conditions that not only affect those who have the condition, but the loved ones who care for them. Earlier diagnosis and effective interventions to prevent diabetes complications are needed, as is improved access to chronic disease self-management support systems and medical care. These improvement strategies must be achieved in large part through digital health solutions that improve access to patient data by clinicians, patients and researchers.
Diabetes Action Canada is enabling a digital health solution, with the recent successful launch of a proof-of-concept Diabetes Repository led by Dr. Michelle Greiver (University of Toronto). This National Diabetes Repository contains de-identified primary care electronic medical record (EMR) data of patients with diabetes. With application of privacy and security compliant methods, these data reside in a data safe haven and can be safely linked with other relevant data (retinopathy screening reports, and clinical trial information) for analytics. Diabetes Action Canada investigators are now able to access this repository data for their patient-oriented observational or population-based studies. Through partnerships with the Canadian Primary Care Sentinel Surveillance Network (CPSSCN), Southern Alberta Primary Care Research Network (SAPCReN), Northern Alberta Primary Care Research Network (NAPCReN), Réseau de recherché en soins primaries de l’Université de Montréal (RRSPUM), and University of Toronto Practice-Based Research Network (UTOPIAN) this diabetes repository currently has data from Ontario, Quebec and Alberta representing over 50,000 patients with diabetes. Plans are currently underway to expand this dataset to include primary care patient data from other provinces and territories.
To ensure the use of this data aligns with the vision and mission of Diabetes Action Canada and that research studies have received appropriate ethics review, a volunteer Research Governing Committee was established. Half of the members of the committee are persons living with diabetes and the other half of primary care physicians and researchers, an unprecedented composition, truly reflecting patient engagement. On January 20th, 2018, the Research Governing Committee assembled for the first time to participate in a training workshop to learn about the specific goals of the proof-of-concept Diabetes Repository, the role of the Research Governing Committee members and how it all ties together. Since then, this Committee has met bimonthly and approved two data usage requests with more to come. This governance model will ensure that the Diabetes Repository data will be used for studies that fulfill our mission of developing patient- and research-informed innovations in health care delivery designed to prevent diabetes complications.
The proof-of-concept Diabetes Repository was a key component of our original SPOR grant proposal as it brings Canada closer to linking digital health systems and patient health data to ensure accurate surveillance of diabetes-related risk factors. The work from this repository will also inform our expanded digital health strategy, which will include a pan-Canadian T1D precise registry. This registry has the initial primary purpose to facilitate timely and effective recruitment of persons living with T1D for clinical trials. Our goal is to position the National Diabetes Repository as a tool for researchers to provide the evidence necessary for health system change to improve the outcomes of Canadians living with diabetes and its related complications.
Mobile Application – bant
In a recent edition of The Economist (Feb. 3, 2018) entitled “DOCTOR YOU: How data will transform health care”, the authors discussed the transformative potential of timely access to personal health data enabling patients and their providers to implement care paths for improved outcomes. To date, many pieces of a digital health record system are in place, but patients are still unable to access their data and health professionals are unable to reach out proactively for preventative and follow-up care. Drs. Joe Cafazzo and Shivani Goyal (University Health Network and University of Toronto) are bridging this gap with innovations in digital communication. Their mobile app, called bant (after Sir Frederick Banting), originally designed for assisting the glucose monitoring in children with T1D, has evolved into a powerful tool assisting the self-management of individuals with T1D and T2D. In partnership with eHealth Innovation at the University Health Network, bant is expanding beyond a self-management tool towards a portal for patient-driven diabetes self-care, where individuals can access their health information, securely communicate with their providers at critical moments, and easily engage in cutting-edge research initiatives across the country. To achieve the latter, our teams are working to develop an e-Consent platform, and framework to enable patients to view relevant research studies, opt-in, consent, and control which data types are shared directly on their mobile device. The bant mobile application will also engage researchers to remotely collect patient reported outcome measures (PROMS) and administer study questionnaires/surveys at the desired frequency, directly on the patient’s mobile device (see figures below). This infrastructure will enable clinical researchers to more easily identify patients based on study criteria, present patients with targeted research opportunities and interventions, obtain consent and enrol patients into clinical trials directly through the system rather than traditional opportunistic recruitment methods, and link patient reported outcomes and research data within the National Diabetes Repository.
Together, the National Diabetes Repository and the bant mobile application are necessary components of the Diabetes Action Canada digital health strategy and provide an unprecedented opportunity for managing diabetes and its related complications.
Conceptual design for use of the bant mobile application to obtain consent from persons living with diabetes to be contacted for clinical research opportunities.