The AAO’s IRIS Registry
The American Academy of Ophthalmology’s Intelligent Research in Sight Registry is the largest clinical specialty database in the world, and it is quickly becoming an invaluable resource for individual ophthalmologists, researchers, and industry.
by Todd Farley
By any quantifiable measure, the American Academy of Ophthalmology’s IRIS Registry is an unqualified success. First conceived of in 2011, IRIS (Intelligent Research in Sight) is today the largest clinical specialty database in the world.
“Our latest numbers indicate that IRIS has data from over 180 million patient eye exams from around 44 million unique patients,” says Michael Chiang, MD, professor of ophthalmology and medical informatics at Oregon Health & Science University and clinical spokesperson for the American Academy of Ophthalmology. “That is an enormous amount of data and to my knowledge the biggest disease registry in any field of medicine anywhere in the world.”
A disease registry is a collection of data that focuses on certain conditions (diabetes, obesity, hypertension, etc.) and which allows participating physicians to see how other doctors around the country are treating those conditions (including what surgeries, pharmaceuticals, or devices they might be using), as well as how patients are responding. The idea is that the more data physicians have access to, the greater the likelihood that they can improve outcomes for their own patients.
Growing IRIS
“The IRIS Registry is a national eye disease registry, and the goal when this was conceptualized was ideally to collect data from every patient examined by every ophthalmologist in the country,” Dr. Chiang says. “Its primary purpose is to let ophthalmologists take better care of patients by using this data to understand how well they are doing relative to others in the field. For instance, ophthalmologists need to know whether their patients’ vision improved after cataract surgery, how much it improved, and whether there were complications. Without registries like IRIS, doctors have no practical way of knowing how well they perform versus other ophthalmologists around the country.”
What Dr. Chiang calls the “tangible planning” for the IRIS registry began around 2011, and it was officially launched on March 25, 2014. While IRIS may now be the biggest disease registry in the world, it wasn’t the first.
“Discoveries like these almost never happen in a vacuum, and the concept of registries is not a new idea, of course,” Dr. Chiang says. “In terms of specialty societies, it was the cardiologists and cardio-thoracic surgeons who put together the first specialty-specific registry — called Pinnacle — which was run through the American College of Cardiology.”
In developing its own disease registry, the American Academy of Ophthalmology was able to both follow the lead of the American College of Cardiology and learn from their experiences. As a result, today the IRIS registry has far more data than does Pinnacle, which Dr. Chiang believes is the result of: 1) the larger number of patients ophthalmologists can see on a given day, and 2) the greater percentage of ophthalmologists using the AAO’s IRIS Registry than cardiologists or cardio-thoracic surgeons using theirs.
“When the IRIS Registry was conceptualized, there was a feeling that its power would lie in the amount of data in there, and with more data it would become exponentially more important as a resource. Because of this philosophy, there is no fee to join. I think that has lowered the barrier to participation,” Dr. Chang says.
IRIS and EHRs
In fact, using the IRIS registry is considered a “member benefit” for any member in good standing of the American Academy of Ophthalmology, with the most recent numbers indicating that some 17,000 eye doctors have already contracted with the AAO to use IRIS. And while the Academy does not pay those ophthalmologists who have contracted to use it, Dr. Chiang explains that that doesn’t mean there aren’t other financial and logistical incentives for those doctors to do so.
“One of the other things IRIS does is help ophthalmologists meet some of the federal government’s so-called ‘pay for performance’ requirements,” he says. “The PQRS, or Physicians Quality Reporting System, was a federal initiative intended to try to improve quality of care based on certain quality measures defined and endorsed by these federal agencies. If you submitted those, you would get a small bonus at the end of the year through The Center for Medicaid/Medicare Services, but the reporting requirements were cumbersome and difficult for most physicians. The IRIS Registry helps ophthalmologists easily submit all those to the federal government.”
Because most ophthalmologists already use electronic health records (EHRs), the relevant data from the eye exams they administer can then easily be uploaded from those EHRs into the IRIS Registry. The end result is a system that allows ophthalmologists to more easily meet those federal reporting requirements and to take better care of their patients. In addition, the vast repository of data that IRIS now holds is proving a boon to researchers as well.
Using IRIS for Research
At its 2017 annual meeting in New Orleans, for example, the AAO announced various findings based on IRIS data: After reviewing records from nearly 14,000 eye exams performed in ophthalmologists’ offices across the United States, researchers were able to determine that treatment of age-related macular degeneration (AMD) was equally effective with three similar anti-vascular endothelial growth factor (VEGF) treatments: Avastin (bevacizumab), Lucentis (ranibizumab), or Eylea (aflibercept)).
Further, they were able to determine that anti-VEGF therapies for AMD led to fewer complications than had originally been thought; that too many patients with diabetic macular edema get no treatment at all; and that a second trip to the operating room after a first macular surgery led to worse visual outcomes for patients.
Partnering With Industry
That the IRIS registry is proving an invaluable tool in the field of ophthalmology is indisputable, and now the AAO hopes to expand its reach through a collaboration with industry. IRIS was initially created without commercial support, being funded entirely by the American Academy of Ophthalmology’s financial reserves (and proving to be the greatest expenditure in its 100-year history). In late 2017, however, the AAO announced an agreement with DigiSight Technologies Inc. to collaboratively operate the IRIS Registry together.
“The Academy had done IRIS completely alone,” Dr. Chiang says. “Data from this registry are interesting to individual ophthalmologists and researchers. But of course they’re interesting to industry, too, because industry is trying to better understand how to develop products that will be most useful in the field.”
As part of the agreement between them, the AAO licensed commercial application of the IRIS Registry to DigiSight. DigiSight is expected to build enhancements to the system and market it to the various industry players (drug companies, device manufacturers, etc.) who would benefit from the wealth of ophthalmic information found in IRIS.
“In other words, Digisight would work with industry to try to learn things from the IRIS Registry,” Dr. Chiang continues, “things like what are the practice patterns being followed or the specific medications being used most frequently in in ophthalmologists’ offices, which would lead to opportunities for developing new drugs or treatments. IRIS could provide information about real-world practice patterns, market trends, and post-market surveillance of particular devices or drugs.”
“Digisight is our only partner,” Dr. Chiang concludes. “They can work with other companies to look at the IRIS data, but the Academy is not contracting with anyone else. The point is that the Academy’s core business is working with ophthalmologists to take better care of patients through clinical care, research, and public health initiatives. I think of the Digisight agreement as a way to outsource industry collaborations to allow the Academy to focus on our core competency of taking better care of patients.”
