Project OPEN Harnesses the Power of Data
By Krista Lamb
With diabetic retinopathy currently a leading cause of blindness in working-age Canadians , the need to do more is clear. That’s why Diabetes Action Canada researchers Dr. Valeria Rac, lead for the Health Technology Assessment and Network Analytics program, and Dr. Michael Brent, lead for Diabetic Retinopathy Screening program, developed Project OPEN.
Vision loss from diabetic retinopathy is often preventable if it’s detected early, but in each of the provinces there is a significant gap in screening. In Ontario, for example, more than 450,000 people (40% of those with diabetes) had not had their eyes checked over a two-year period. According to ICES data, a large majority of those who have not received screening are from low income areas in large cities.
Project OPEN takes a population-based approach to this problem. They are using administrative health data to identify people living with diabetes who have not had an eye examination more than a year. Their goal is to identify and engage patients, improve access and awareness of screening and improve health outcomes. Patients are then directed to one of the participating community health centres to receive a screening. Funding for the project is being provided by Fighting Blindness Canada and a private donation.
“When we asked people living with diabetes what is the most important for them, it was actually eyesight. That’s where the discrepancy was between the patients and providers. Providers identified other priorities, but patients were very clear that the number one priority for them was that they have an opportunity to keep their vision,” says Rac. This helped her team understand what people with diabetes wanted and to create a program that would help to achieve it.
Project OPEN is a unique opportunity to use administrative data in a way that puts those living with diabetes at the forefront. It is, Rac explains, using data that already exists to improve clinical care. Data from ICES will be used to identify people who have not been screened. Then, using electronic medical records, individuals will be referred to the participating community health centres for an exam.
The program has a particular focus on underserved communities, such as new immigrants, asylum seekers and the uninsured, who may not realize that they are eligible to receive this service. Many, Rac explains, would not even show up in electronic medical records if it were not for the participation of the community health centres. These are often the only places vulnerable populations will seek treatment.
“I think at the root of this project is also enhancing overall awareness,” says Jim Bowen, program manager for the Health Technology Assessment and Network Analytics program within Diabetes Action Canada. “The fact that 40% of people had not been screened indicates that there’s a lack of awareness of the availability and the funding for this screening. In order to prevent blindness, we need to make sure people understand that they need to get their eyes checked on a regular basis.” Project OPEN helps increase this awareness and access.
Working with a Diabetes Action Canada Patient Partner, Debbie Sismore, who herself is blind due to diabetic retinopathy, was a huge help in developing the program. Both Debbie and her husband, Malcolm, were involved in the project from the initial conception in order to ensure input from those who are living with this particular complication. “Both Debbie and Malcolm, as an example, provided input on the interview guide that we will use to interview patients about their experience with the screening that is currently ongoing in different community health centers,” says Rac, explaining how the duo have helped to create resources that will work well not only for health care providers, but also for those living with diabetes.
The involvement of those with diabetes will continue to be a priority for the team, as they move into the next phase of this project. Rac is hoping to engage more people with diabetes from vulnerable populations to ensure the program continues to fit their needs.