IRIS Registry represents sea change in practical use of ‘big data’

A maturing clinical registry will support ophthalmologists’ efforts to maximize clinical outcomes and conduct research, a speaker said during a webcast of the Focus on Eye Health National Summit.

The summit, held at the National Press Club in Washington, D.C., was sponsored by Prevent Blindness.

Discussing “the transformative potential of big data,” William L. Rich III, MD, medical director of health policy for the American Academy of Ophthalmology, described early development of the AAO’s Intelligent Research in Sight (IRIS) Registry. The IRIS Registry is used to store and evaluate data from member physicians’ electronic health records.

“IRIS is a clinical registry that will represent a seminal change in how we improve our performance and outcomes,” Rich said. “It will shorten the timeline for the dissemination of important clinical knowledge, expand research opportunity, and facilitate drug and device surveillance.”

When the registry was launched in March 2014, Rich and fellow AAO officials hoped to have 2,200 ophthalmologists participating by 2017. By April 2015, more than 6,000 U.S. ophthalmologists were participating, and it is now hoped that 8,000 will be onboard by 2017, he said.

“That’s a lot of big data. So what?” Rich said. “It leads to better outcomes, research, informing public policy, population health and surveillance.”

Rich said that using outcome data from clinical registries can reduce complication rates.

“Physicians, if they’re given the chance to get rapid feedback, can improve, and they’ll publicly report it,” Rich said.

Unlike similar databases, the IRIS Registry will be used to track patients longitudinally over time, Rich said.

“One of the problems with clinical registries is the lack of randomization,” he said. “We’re an outpatient registry with the ability to follow patients longitudinally. Most registries are only able to follow a short-term evaluation of drugs, devices and procedures but are unable to measure their impact longitudinally. We have taken the intervention in a hospital or ASC and put it into the longitudinal care base where patients are seen, so that’s why we’re able to follow them longitudinally.”

In addition, data from the registry will be used to conduct large clinical trials at a significantly lower cost than that of traditional clinical trials, Rich said.

The registry will also be used to conduct post-market surveillance of drugs and devices.

“Currently, 60% of Class 3 devices have post-market surveillance. Only 6% are done by independent registries. The others are done by for-hire registries by industry. I’m not sure that’s in the public interest,” Rich said. “FDA and CMS have a big concern about that. They’re actually looking to incorporate more clinical registries to independently look at surveillance and signals. They’re going to come out with a unique device identifier that’s going to be included in EHRs for 2015. ... They’re looking to rely on longitudinal registries. We’re kind of the leaders in this, along with the American College of Cardiology.”

Currently, there are eight other clinical registries and another 12 are in development, Rich said. – by Matt Hasson

Disclosure: Rich reports no relevant financial disclosures.