AAO Rolls Out Comprehensive Patient Registry

Norra MacReady

April 03, 2014

The American Academy of Ophthalmology (AAO) has launched a new registry that will harness data from millions of patients to tell ophthalmologists what works, what does not, and how their patient outcomes compare with those of their colleagues around the nation.

Called the Intelligent Research in Sight (IRIS) registry, the new venture is the first comprehensive eye disease and condition registry in the United States, the AAO explains in a release. IRIS will gather data maintained in electronic health records and act as a central repository and reporting tool. It is also capable of performing sophisticated statistical analyses, which will provide clinicians with evidence-based information on the most effective treatments and interventions and help researchers by facilitating the design and implementation of large clinical trials. Any AAO member can participate.

IRIS began a limited rollout in 2013 and had 2500 physicians enrolled by March 2014, with 18 million patient records, William L. Rich III, MD, told Medscape Medical News. "That's an immense amount of data to mine for outcomes and information on how we treat different patient populations — African Americans with glaucoma, or Hispanics with diabetes, for example," said Dr. Rich, medical director of health policy for the AAO.

The AAO had tried to create this type of registry more than a decade ago, but the necessary technology was still in its early stages, Dr. Rich explained. Meanwhile, the academy learned from other medical organizations, such as the American College of Cardiology and the Society of Thoracic Surgeons, which developed databases that helped their members make dramatic improvements in the mortality rates associated with some of their procedures.

Those registries "are great, but they don't track long-term data such as the impact on quality of life or the natural course of a disease, so we kind of sat in the shadows until the technology evolved," Dr. Rich said. "Our data look at the impact of our surgeries, new biologics, and new drugs, and follow patients longitudinally."

The Centers for Medicare & Medicaid Services (CMS) also gives physicians financial incentives to participate in registries that provide feedback on outcomes, Dr. Rich told Medscape Medical News.

Given the personal nature of the information and the enormous number of records in the database, security is naturally a concern, he acknowledged. The information is protected with "the highest degree of security known today. And so far there has not been a single data breach of any of the medical registries that are out there, like the American College of Cardiology, which has 6 registries, or the Society of Thoracic Surgeons, which has records on the vast majority of the heart surgeries performed in the United States. No security lapses."

Practicing ophthalmologists have greeted IRIS enthusiastically. "This is the first time that anyone has tried to pull together big data for ophthalmologists and ophthalmology patient encounters, which really means patient care results and interventions," said Barrett Katz, MD, professor of ophthalmology, neurology, and neurosurgery, Albert Einstein College of Medicine, Bronx, New York. "So as the encounter is entered into the medical record in the physician's office, off-hours the IRIS system will add it to the data set of all other ophthalmologists who are practicing nationwide, so one can use it to improve patient care and practice patterns."

For example, a clinician can compare the intraocular pressure achieved by his glaucoma patients after therapy with nationwide results, said Dr. Katz. That information can help the physician determine whether his results match or even exceed those of his peers, or if perhaps he needs to use more-aggressive therapies. "So I think this offers a great possibility of improving patient care and patient outcomes by pulling all the ophthalmologists together to poll their individual practice experiences in their own offices," Dr. Katz said.

"I think tracking our outcomes and performance is really the future of medicine," said John Bartlett, MD, chief of University Ophthalmology Associates, a multispecialty group practice at the Stein Eye Institute at the University of California, Los Angeles. "We've done small clinical trials, where you're tracking a small subset of patients, but I think the idea of trying to include all the patients you see and then looking at how your intervention actually resulted in benefits or lack thereof is the next step in how you tailor medicine. So I think it makes a lot sense. I'm very much in favor of collecting data like that."

Security may be a concern, he noted, but "I don't know if it's any different for the academy to collect the information vs large health networks like [the University of California, Los Angeles,] collecting information in our electronic health record." If anything, IRIS probably will not have as much sensitive information as the electronic health records of large health systems, because it can use identifiers that keep patients anonymous, unlike other systems that use patients' Social Security numbers.

Some clinicians fear that CMS or private insurers will use the information on outcomes to penalize them if their results do not match those of their colleagues. "There is a very real feeling that CMS and other insurers are looking for any excuse to cut reimbursement," Dr. Bartlett told Medscape Medical News. "But I've always felt that if you keep an eye on doing what's best for the patients and trying to improve outcomes, that it makes it harder to punish you on the reimbursement side, so I worry a little less [about CMS]."

"The interest and the desire among ophthalmologists to participate has been overwhelming," Dr. Rich said. "Our original goal was to have 2200 doctors participating by 2017, and we've already surpassed that. We've received a broad base of support, from 2-person practices to large academic medical centers. This has the potential to change the way we practice."

Dr. Rich, Dr. Katz, and Dr. Bartlett have disclosed no relevant financial relationships.

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