Blindness is one of the most disabling complications of diabetes and is preventable with timely diagnostic screening and early treatment. Diabetes remains the most common cause of blindness in our working aged population and has remained unchanged for many decades. Retinopathy occurs in 25% of persons with diabetes and, unfortunately, many are unaware of the diagnosis until it is too late to treat. Rates of vision loss are highest among those experiencing lowest socio-economic environments, the uninsured and Indigenous communities.

The health system challenge is identifying persons with diabetes who need screening. This must include socio-culturally safe education about prevention and offer of convenient retina imaging, treatment follow up and ongoing surveillance.

By engaging persons who are blind due lack of timely diabetic retinopathy screening, DAC investigators Drs Michael Brent and Valeria Rac co-designed, implemented and evaluated a new data-informed approach to identifying those who need screening. The project was conducted in collaboration with the Ontario Alliance for Healthier Communities, ICES and two Toronto Community Health Centres (CHCs), home of a regional diabetic eye screening program where 17% of clients are uninsured, 76% are racialized and 56% have an annual income less than $30,000. Using CHC electronic medical record (EMR) data linked to provincial billing data for retina image scans, screening according to clinical practice guidelines was analyzed. Using all the Ontario CHC EMR data, 72,000 clients with diabetes were found to be unscreened according to evidence-based clinical practice guidelines. The clients at the two CHCs were identified enabling health professionals to contact them. Once screened, 29% had previously undiagnosed diabetic retinopathy (9% with sight threatening disease).

Many CHC clients were women who, in a qualitative arm of the project, identified multiple socio-economic and environmental barriers for finding time for screening and other aspects of diabetes self-management. Now, the CHCs are developing a call/recall approach for diabetes eye screening using EMR data. With better understanding of their clients’ needs, they are proactively improving social, educational and cultural safety supports necessary for timely screening and prevention of vision loss.

This project also assessed the cost-effectiveness of the CHC diabetic eye screening program and treatment in the most vulnerable, uninsured population, e.g., new immigrants, compared with a no screening/no therapy option. The return on $1 investment on screening and subsequent low cost treatment for retinopathy progression was $26.95, and for high cost treatment was $7.66.

Dr. Rac has acquired a CIHR Team grant to engage 3 other provinces in a similar patient-oriented research data-informed retinopathy screening project paving the way for establishing improved screening to prevent blindness caused by diabetes.

These convincing outcomes for establishing data-informed screening for diabetic retinopathy, including those who are uninsured, were presented to Ontario Health and the Ontario Ministry of Health policy-makers at a Diabetes Policy Roundtable in Sept 2024 co-hosted by DAC and the Ontario SPOR SUPPORT Unit. This DAC data-informed solution is ready to spread and scale within the CHCs and other primary care sites across the province.  As part of a Diabetes Action Plan, Ontario Health is now prioritizing a pathway for provincial diabetic retinopathy screening – a first in Canada.