August 2018


Establishing a national vision health surveillance system

by Liz Hillman EyeWorld Senior Staff Writer

“The uses of the VEHSS data are limited only by the curiosity and ingenuity of those interested in visual health. We’re excited to see what creative uses the public comes up with.”
—David Rein, PhD, and John Wittenborn

The Vision and Eye Health Surveillance System will provide comprehensive prevalence data in the U.S.

There is a significant economic burden associated with vision and eye health problems; according to research, it may be the fifth leading cause of U.S. medical expenses.1 Vision is also a sense that Americans fear losing more than other abilities, such as loss of a limb or loss of hearing.2
Yet, estimates of the prevalence of ocular issues within the U.S. vary widely.
“We as a nation still cannot accurately quantify how many people have these conditions,” said David Rein, PhD, and John Wittenborn, both with the National Opinion Research Center (NORC) at the University of Chicago, Atlanta. “Even for a seemingly simple question, such as how many people are blind, one can find estimates that vary by as much as 500%.”
As such, in 2015, the Centers for Disease Control and Prevention awarded a cooperative agreement to NORC to create a Vision and Eye Health Surveillance System (VEHSS).3 According to Dr. Rein and Mr. Wittenborn, the VEHSS is being designed to eventually support six previously published surveillance system standards: “(1) identifying newly emergent health problems; (2) assessing the public health impact of problems; (3) identifying correlative risk factors for disease acquisition or progression; (4) allocating resources for disease management, care and control, and targeting intervention or research investments; (5) evaluating the effectiveness and impacts of interventions, policies, and public health strategies; and (6) supporting research inquiries and scientific hypothesis generation.”
As Dr. Rein, director of the Public Health Analytics Program, and Mr. Wittenborn, senior research scientist, told EyeWorld, “Timely information on the prevalence of and care for visual health conditions in the healthcare system, and information on geographic and demographic variations and trends is vital in raising awareness about eye conditions, identifying areas for prevention and other health responses, and for allocating resources.
“Our goal for the VEHSS information system is to provide information to the public in a form that is easily accessible, informs a wide range of possible questions and decisions, and allows for the evaluation of information at the national and local level,” they said.
The system is being developed to support the widest amount of possible uses by the widest number of possible users.
“The uses of the VEHSS data are limited only by the curiosity and ingenuity of those interested in visual health. We’re excited to see what creative uses the public comes up with,” Dr. Rein and Mr. Wittenborn said.
While many studies have addressed the prevalence of specific visual conditions and eye disorders in the U.S. and around the world, the VEHSS aims to be comprehensive.
“The VEHSS system is attempting to provide information on a large number of eye and vision conditions, derived from many disparate data sources, evaluated using common disease definitions and methods. The VEHSS will allow users to directly compare estimates for similar conditions across datasets using common evaluative categories. When complete, the VEHSS will also provide summary prevalence estimates based on information from multiple datasets,” Dr. Rein and Mr. Wittenborn said.
Rein et al. recently published an update on the VEHSS status, which explains that current prevalence estimates are usually meta-analyses from population-based study data that might not be up to date or nationally representative.3 Self-reported responses from national surveys also vary in definitions and can be unreliable.
“The strength of the VEHSS is that it will incorporate and integrate existing studies and data, as well as introduce some exciting new data systems to the public domain. Altogether, this will create a much more comprehensive picture of the visual health landscape than would be possible using any of the underlying data sources alone,” Dr. Rein and Mr. Wittenborn said, adding that they will be incorporating information from dozens of previously published studies and at least six national surveys. They will be analyzing five administrative claims systems and electronic health record registries for inclusion of data as well.
While each data set included in the VEHSS will be available independently, the program will also combine information from multiple data sources to create a set of comprehensive, nationally and state representative prevalence estimates for vision loss and major eye diseases. “By using multiple data sets we can fill in gaps missing from individual data sources while also adjusting for selection or reporting bias in administrative and registry data using nationally representative data collection systems,” they explained.
The public will have access to the VEHSS through a website and data portal. This will allow anyone to analyze and assess publicly available summary data from every VEHSS dataset without charge or use restrictions, Dr. Rein and Mr. Wittenborn said. They said the website will have a “truly vast amount of prevalence information” and more will be added in the next year.
“All told, we expect to include multiple distinct data sources that altogether will summarize eye and vision information from more than 200 million patient-level records per year into de-identified, publicly available data tables for more than 100 different measures of visual health, eye disease and service utilization,” Dr. Rein and Mr. Wittenborn said.
The VEHSS is being developed with several partnerships and with input from experts in ophthalmology, optometry, surveillance, data science, epidemiology, and public health research.
“The effort and logistics involved in identifying, acquiring, storing, cleaning, analyzing, and presenting this information to the public through a user-friendly website is beyond anything I’ve previously been involved with in my career,” Dr. Rein said. “Now that we have all these data assembled, we get to have some fun and work on applying advanced statistical methods to develop a new set of national summary prevalence estimates. All told, from start to finish the project will take 4 years to complete the goals established in the project proposal materials. The website containing the first wave of data will be available this year with the completion of the first wave of the product expected by October 2019.”


1. Wittenborn JS, et al. Cost of vision problems: The economic burden of vision loss and eye disorders in the United States. Chicago: NORC at the University of Chicago; 2013.
2. Scott AW, et al. Public attitudes about eye and vision health. JAMA Ophthalmol. 2016;134:1111–1118.
3. Rein DB, et al. Establishing a vision and eye health surveillance system for the nation: A status update on the Vision and Eye Health Surveillance System. Ophthalmology. 2018;125:471–473.

Editors’ note: Dr. Rein and Mr. Wittenborn have no financial interests related to their comments.

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