The National Diabetes Repository unleashing the power of data to better understand those living with diabetes and transform diabetes self-management
How do we know the number of people living with diabetes in a province? Is that number going up or down? When we compare Canadian results to international data, are new medications with preventive benefits being used more or less by our population? 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. Harnessing the power of data to better support people living with diabetes and to improve health care is a key element of our work in this area and recent partnerships with organizations using artificial intelligence are providing unique opportunities for the future.
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