Using health data to transform to better understand those living with diabetes and transform diabetes self-management. Engaging patients through digital health.
Babak Aliarzadeh, Onil Bhattacharyya, Rick Birtwhistle, Gillian Booth, Neil Drummond, Serge Dumont, Jean-Francois Ethier, Julie Gilmour, Shivani Goyal, 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
1.The National Diabetes Repository unleashing the power of data to better understand those living with diabetes and transform diabetes self-management
Key features of the National Diabetes Repository
- Secure remote access in a Privacy compliant analytic environment = Privacy legislation satisfied and data security meets or exceeds ISO standards
- Data across provincial boundaries = 4 provinces with over 100k patients living with diabetes
- Ability to collect Patient Reported data (PREMs and PROMs)
- Eliminates the need for Data Sharing Agreements and Data Transfers = Less Risk and substantial cost savings
- High-Performance computing = No need to purchase expensive equipment
- Validated Type 1 vs. Type 2 algorithm
- In collaboration with Primary Care Practice-Based Research Networks (PBRNs): recruitment for clinical trials
- In collaboration with PBRNs and Administrative data Partners: Primary Care EMR Data linked with Administrative data = Linkage of deep EMR and broad Administrative Dat
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 the 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, Manitoba 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 and patient-reported data through Ocean tablets
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. 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. 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
2. Engaging patients through digital health - the bant mobile application
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.