Early screening can save sight
Researchers and patient partners are leading the charge to improve diabetic retinopathy screening in Canada, preventing blindness and preserving health care dollars.

Ryan Hooey never imagined he would lose his sight. "Some people's biggest fear, other than public speaking, is going blind," he says.

Ryan has lived with type 1 diabetes for more than 30 years. When he was 27 years old, he lost his vision due to diabetic retinopathy.

Diabetic retinopathy occurs when unhealthy blood, often due to high blood sugar levels, affects the part of the eye called the retina, sometimes causing it to tear or detach completely. When diabetic retinopathy goes undetected, it can lead to partial or total loss of vision. It is the leading cause of blindness among working-age people living in Canada. 

Sometimes there are early warning signs: blurred vision, floaters, or colour changes. But often there are no signs at all. That's why regular screening is so important.

Ryan has teamed up with Dr. Valeria Rac, Senior Scientist at UHN's Toronto General Hospital Research Institute, to improve screening for diabetic retinopathy in Canada with a goal of preventing vision loss.

In a completely painless process, special cameras screen the eyes for diabetic retinopathy. If diabetic retinopathy is detected early, different treatment options can help preserve sight. However, many people are not regularly screened, and screening is especially inaccessible in remote and Indigenous communities, as well as for vulnerable groups including asylum seekers or migrant workers.

"There was a huge inequity in access to care," notes Dr. Rac. "This drew me to research diabetic retinopathy and try to figure out how to increase awareness of the importance of screening and access to screening."

Working with community health centres in Ontario, with support from key partners including Diabetes Action Canada, the research team invited people living with diabetes to come in for a screening. They found that nearly one third of people who came in for a screening at a community health centre had signs of diabetic retinopathy, which would otherwise have slipped through the cracks and gone untreated. "If we were able to screen everybody with diabetes in Canada, the numbers would be staggering," notes Ryan.

On top of preserving vision, diabetic retinopathy screening can also save the country a lot of money. A study done by an early career researcher on the team, Dr. Aleksandra Stanimirovic, found that for every $1 invested in screening, $27 is returned to the health care system by way of averted costs.

"Of course it's beneficial for people, but it's also beneficial for health care systems," explains Dr. Rac. "We want everybody to be screened. It's a no-brainer."

The team is continuing to push for better diabetic retinopathy screening, with patient partnership at the core of their work. "The contributions of people with lived experience like Ryan are immeasurable," says Dr. Rac. Engaging patient partners from the outset helped shape the research priorities, study design, and focus on outcomes that mattered most to people living with diabetes and diabetic retinopathy.

"It's worth the fight," says Ryan. "There's so many other folks out there, whether they're young or elderly or someone with a family or someone that's single, that could use the help, that could use the information, and that could be part of the solution."

At a glance

Issue

Diabetic retinopathy is the leading cause of blindness among working-age people. Regular screening can often prevent vision loss, but many people with diabetes are not screened, not realizing their vision is at risk until irreversible damage has occurred.

Research

Researchers and patient partners are improving access to screening for diabetic retinopathy. For every $1 invested in screening for diabetic retinopathy, $27 is returned to the health care system by way of averted costs.

Funding

This research was supported by Diabetes Action Canada with funding from multiple partners including Diabetes Canada and CIHR via the Strategy for Patient-Oriented Research (SPOR).