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Celebrating the 8th Birthday of IRIS® Registry with a Look at the Past, Present, and Future

Author: David W. Parke II, MD
March 2022
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The spirit that brought the IRIS Registry to life is present in today’s offerings and tomorrow’s potential.

March 24, 2022, marks the 8th birthday of the American Academy of Ophthalmology (Academy) IRIS® Registry (Intelligent Research in Sight), the anniversary of one of the innovations that thrust ophthalmology into the age of big data. Members of the Academy have already experienced many of the benefits of participating in the IRIS Registry, and many members are curious about what’s in store for the coming years. Before we explore how the IRIS Registry’s partnership with Verana Health is paving the road to the future, let’s revisit the birth of this database and take stock of the IRIS Registry’s current status.

IRIS Registry’s mission to improve the quality of care offered to patients is at the heart of each step forward.

As we do this, keep in mind that the IRIS Registry’s mission to improve the quality of care offered to patients is at the heart of each step forward. Verana Health remains committed to supporting the IRIS Registry’s goals, as you’ll see here. 

The IRIS Registry’s Birth and Growth 

At its core, the concept of the IRIS Registry—that a centralized database of real-world data could be aggregated and organized to better understand the field of ophthalmology in a way that would ultimately benefit patients—is consistent with the spirit of public health in medicine. Registries have been used for decades to support the aggregation of clinical data to advance the science of medicine. Paper-based tumor registries, for example, have been an important clinical tool for many, many years. Manual-entry databases for hospital-based cardiac procedures looking at mortality and complications have also provided a basis for outcome evaluation. The widespread adoption of electronic health records (EHRs), and software to extract data into large storage and analytic systems was the next major stage in registry evolution.

By 2011, an Academy task force investigated whether software that could communicate with EHR systems might serve as a backbone to developing a digitized clinical data registry specific to ophthalmology. In 2013, the Academy Board of Trustees authorized the establishment of, and funding for, the development of a digital clinical data registry that subsequently was named the IRIS Registry.

In 2014, the Academy invited U.S.-based members to participate in the IRIS Registry at no cost to them or their practice. Many clinicians linked their practices’ EHR systems to the IRIS Registry, allowing easy transference of data, which is de-identified and anonymized in the interest of protecting patient privacy. Soon after, as federal changes linked quality reporting to reimbursement bonuses and penalties, the Academy facilitated submission of quality reporting to the relevant regulators via the Centers for Medicare and Medicaid Services (CMS) under the Merit-based Incentive Payment System (MIPS) program. This reporting offered members a financial incentive to participate in the IRIS Registry and made the submission process more efficient and effective. To date, ophthalmologists who report using the IRIS Registry have avoided $1 billion in potential penalties under MIPS.

The relatively low burden and high potential for reward of participation meant that the database flourished. A year after launch, approximately one-third of U.S.-based Academy members participated in the IRIS Registry, which housed 18 million patient encounters; by 2016, nearly two-thirds participated and 72 million patient visits were logged. Today, participation has increased so much that, to date, 515 million patient encounters are recorded. 

As the database grew, its operational costs increased. In 2017, the Academy partnered with Verana Health (formerly DigiSight) to curate the IRIS Registry and serve as a steward of patient and physician data. Now, Verana Health is entrusted with the end-to-end management of the physician-generated data from the IRIS Registry. This starts with ingesting, cleansing, and harmonizing the data to power quality reporting for participating physician practices and goes through to transforming it into research-ready Qdata™ modules to drive analyses for life sciences organizations. The life sciences collaborations–ranging from clinical trial site and subject identification through to post-market, real-world evidence generation–help drive important research to accelerate ophthalmic innovations that advance patient care and offset the considerable costs of refining, growing, and analyzing the IRIS Registry data. 

As growth occurs, patient and physician privacy continue to remain of utmost importance. Verana Health’s de-identification protocols help ensure that HIPAA compliance and data protection are achieved and maintained, which is also a requirement enforced by the Academy  for any custodian of data housed in the IRIS Registry. 

Recent Innovations

The IRIS Registry seeks to accomplish its broad mission of improving the quality of patient care in three ways: 

  1. To improve the quality of care offered to ophthalmic patients 
  2. To deepen the field’s understanding of real-world practices and outcomes 
  3. To inform broader health policy decisions 

A look at how the IRIS Registry is serving each arm of that mission today illustrates the power of a curated specialty database—a status that would not be possible if not for Verana Health’s commitment to helping organize and maintain the IRIS Registry. 

New physician dashboards, debuted by Verana Health, allow ophthalmologists to access quality reporting benchmarking data that can improve care at the practice level. Practice data are reconciled against VeraQTM, Verana Health’s robust data engine, thereby ensuring accuracy. And because data are pulled from EHR software on a regular basis, information supplied in the dashboard interface is reasonably current.

If a user observes that particular quality metric measures are not being met, Verana Health dashboards can help physicians drill down to the details so that targeted action can be initiated. After entering sufficient data into their EHR systems, the practice’s data (only with physician approval) will be submitted correctly to the relevant regulatory bodies. 

On a broader scale, the Academy’s partnership with Verana Health has empowered researchers to reassess diseases and make novel observations. In many instances, reliable conclusions about the state of real-world conditions require a large population database. Until the IRIS Registry was able to aggregate recent data entries on a large enough scale—and until Verana Health was able to curate the raw data into a database and Qdata modules useful to researchers—such real-time observations were generally less available than they are today.

In a recent instance, a clinician-scientist preparing a presentation on amblyopia turned to the IRIS Registry for updated statistics. During his research, racial differences in outcomes of care were observed. This was the first time such a finding had been backed up by real-world data. These findings could lead to policy improvements, and initiatives that are intended to address this inequity, shaping  ophthalmology practice guidance moving forward.

Comparable to my former role as CEO of the Academy, in my new role as Executive Chairman of the Verana Health Board, I strive to be a force multiplier. My goal is to help articulate the ways in which Verana Health’s capacity for curating a large-scale database, and creating data-driven physician tools, may achieve the greatest benefits for practicing ophthalmologists and their patients. But I am not alone: Verana Health employs team members whose specialty-specific knowledge is necessary for the creation of tools that will enable data-powered change in medicine. Given the number of employees whose understanding of medicine is integral to their role, it is perhaps unsurprising that Verana Health has been a key partner in endeavoring to ensure that the IRIS Registry reaches its fullest potential. 

What Does The Future Hold? 

From improving patient care to driving critical research, the possibilities for innovation are limitless. 

In the near future, the IRIS Registry and Verana Health may further improve ophthalmology’s ability to identify patients who fit the inclusion/exclusion criteria of clinical trials; indeed, these initiatives are already underway. Rapid identification of patients could truncate the enrollment timeline of clinical trials, which could help patients access new therapies sooner. 

Verana Health will be instrumental in deepening the IRIS Registry in the coming years. By linking EHR data to medical and pharmacy claims, insights along the full patient journey may soon be discovered, allowing future researchers to, for example, connect clinical outcomes to processes of care and treatment adherence patterns. With the help of Verana Health’s artificial intelligence (AI) capabilities, the IRIS Registry is growing more robust as patient imaging reports are harmonized with patient profiles, allowing clinician-scientists to analyze trends in the images that are omnipresent in modern practice. If AI-enabled translation of unstructured notes housed in EHRs is shown to be feasible, then it may allow  comparisons of qualitative observations made by clinicians who participate in the IRIS Registry. These examples, although still in their earliest developmental stages, illustrate the potential of the partnership between Verana Health and the IRIS Registry. 

On the practice level, IRIS Registry participants could be able to track their patient outcomes against standards established in the literature and, with the help of Verana Health and the Academy, take steps to improve elements of their practice that are underperforming. Take, for instance, a glaucoma surgeon who finds that their surgical success rate, measured in this example as the percentage of patients whose postoperative intraocular pressure (IOP) is within a normal range without requiring medication, is below the literature-established threshold. This surgeon could be prompted to engage with a self-paced, personalized learning plan on the Academy website. Verana Health could then continue to track their postoperative success, and could inform them of any progress observed since completing the learning plan.

In the long term, the possibility of interspecialty research seems less like an idealized vision and more like a possibility. Other specialty medical societies have leveraged the power of Verana Health to curate their databases. The potential to use real-world data to better understand conditions that affect multiple systems is becoming a reality.
The future of the IRIS Registry is bright, and the benefits to its growth are being realized. Reflecting on how the partnership between Verana Health and the IRIS Registry has helped to advance research and improve the quality of patient care is an appropriate way to celebrate the IRIS Registry’s 8th birthday. Imagine what findings we’ll discover next.