In November of 2013, The American Academy of Ophthalmology launched its Intelligent Research In Sight registry, and, since then, the registry has shown a lot of promise. Given IRIS’s staggering growth and recent collaboration with DigiSight, it’s a good time to take a look at the registry and some of the opportunities it offers.
William Rich III, MD, AAO’s medical director of health policy and chairman of the executive committee of the IRIS registry, is excited by the success of the program. “We were overwhelmed with the rate of growth, initially,” he says. “It’s exciting to have 45.75 million patients and 189.62 million charts in a registry. So, in the last quarter of 2017, we decided to take a breath and look at the data.
“Typically, if you have a great, solid trial, the number of years it takes for that practice or technique to be adopted by practitioners is around 10 years,” he says. “IRIS is actually turning that on its head. We’re seeing immediate improvement.
“Within the data, we found some really surprising things, the first of which is a gap in care,” Dr. Rich continues. “Much to our shock, 40 percent of patients under the treatment of a physician with diagnosed diabetic macular edema did not have any treatment in the first 12 months, for example.”
Another surprising finding was in the realm of rare genetic diseases. “If it’s a rare disease, there will only be a few hundred cases,” says Dr. Rich. “How do you find them in the millions? This registry nails down the rare cases that have similar through-lines of treatment that physicians can use for educational purposes or even informed treatment options.”
A lot of the results from IRIS fall right in line with the initial expectations of the registry, however. “One of the things we looked at is disparity in care—we talk about that a lot now,” Dr. Rich continues. “Sometimes there are groups of patients that don’t do well even if they are in the health-care system. With IRIS data, we now have mechanisms through which we can look at similarities or trends across demographics.”
Dr. Rich says the registry has also helped physicians improve the quality of their care. “That’s what this is all about,” he says. “A basic tenet of the registry is that if you look at performance compared to your partners or 17,000 other ophthalmologists, and you see that your performance is lacking, you can query the database and see why that is. We’ve seen aggressive improvement through specific outcome and quality measurements as a result of evaluating ourselves on a monthly basis. I think that’s huge. It was our dream that this would be a resource of expanding clinical knowledge that would be widely available for analysis, and it’s finally there. It’s happening a lot sooner than we anticipated.”
Another big move for IRIS occurred in an effort to bring in revenue to help fund the registry. Allowing ophthalmic companies to conduct studies using the “Big Data” of IRIS will bring in revenue and further the growth of IRIS, Dr. Rich avers. However, the academy required an entity experienced with “big data” and pricing such studies. “Our partnership with DigiSight was finalized in November,” Dr. Rich says. “DigiSight is a contractor for the Academy. We couldn’t figure out a way to price or value these studies and trials. That’s where DigiSight comes in. They understand the significance of big medical data and how to price a study. Because of them, the Academy gets some revenue stream and ongoing funds for IRIS and clinical research.” REVIEW