Surveillance system aims to accurately estimate vision impairment
WASHINGTON – The Vision and Eye Health Surveillance System leverages new and existing data sources to help patients, health care professionals, researchers and policymakers understand the scope of vision loss and eye disorders in the U.S, according to Kira Baldonado, at the Focus on Eye Health National Summit.
“Alone, none of our current data sources paint the picture of what’s going on [from a national perspective] in every eye disease,” John Wittenborn, who manages the 4-year project from the University of Chicago, said at the summit. “Through this framework we will get a much more robust result.”
The project, known as VEHSS, is in the third of its 4 years and is funded by a grant from the CDC Vision and Health Initiative.
The system is public, Wittenborn explained.
“VEHSS should really include all of us,” he said. “We are making every effort to create an inclusive system and are listening to your feedback, needs and ideas.”
The need for VEHSS came from the current, limited epidemiological data, which is only getting older, he said.
“We are now in the age of big data ... but where is it? You can’t really access it, and very few people have the means or opportunity to utilize that information,” he said. “We had the confluence of a need and a big opportunity to do something new.”
The first step in the ongoing effort is to establish a foundation to continue to build a national data surveillance system to consolidate existing information and resources that were previously scattered, Wittenborn said.
“The most exciting and ambitious part of this project is the generation of a new set of comprehensive prevalence estimates for visual impairment, blindness and for major eye diseases,” he said.
In 2016, they began by sorting through the datasets that were available, performing a comprehensive literature review and relying heavily on an expert advisory panel, he said. This year they focused efforts on analyzing the data and putting it online, but there is still work to be done.
“We will continue to improve the website and add more data and create case definitions and frameworks on how we measure outcomes,” he said.
With help from the framework behind WHO’s Global Burden of Disease project, they currently have eight datasets available for free and public use. WHO’s model integrates multiple data sources to create prevalence estimates for nearly every disease in nearly every country, he explained.
VEHSS data includes a literature review, national surveys, such as the IRIS Registry, and Medicare and vision insurance claims data, Wittenborn said.
For example, the glaucoma category has 79 subgroups, including primary open-angle glaucoma.
Medical diagnoses from 5,000 optometry-related ICD-9 and ICD-10 codes are included.
Vision eye health instrumentation has also been categorized.
Data can be analyzed by map format, table or chart, he added. Outcomes can be estimated and categorized by race, stage of disease and other factors. A one-page PDF fact sheet can be tabulated with important footnotes included at the bottom.
Wittenborn added that understanding the limitations of each dataset is essential.
In 2019, the project will continue to grow its new prevalence estimates in blindness, visual impairment, AMD, cataract, glaucoma and diabetic retinopathy through examination-based studies, claims databases, surveys and EHR registries.
The data can be accessed at: www.cdc.gov/visionhealth/vehss. – by Abigail Sutton
Wittenborn J. Vision and Eye Health Surveillance System. Presented at: Focus on Eye Health National Summit: Research to Impact – Honoring 50 years of the National Eye Institute. July 18, 2018; Washington.
Disclosure: Wittenborn is employed by the non-partisan and objective research organization NORC at the University of Chicago. No other financial disclosures were reported.