CDC embarks on vision, eye health surveillance
Researchers hope to harmonize data from existing systems and disseminate population estimates online.
The CDC announced in July at the Focus on Eye Health National Summit that it was embarking on developing a National Vision and Eye Health Surveillance System in conjunction with NORC at the University of Chicago.
According to information presented by the CDC’s Vision Health Initiative during a live webcast of the event, public health surveillance can measure the burden and identify high-risk groups, identify vision/eye health disparity, prioritize programs and evaluate progress.
The CDC began a cooperative agreement with NORC (formerly National Opinion Research Center) at the University of Chicago, by which CDC staff will assist, guide, coordinate or participate in project activities, according to the CDC’s slide presentation.
The CDC listed the project objectives as:
- Identify, evaluate and compile existing data sources on vision and eye health;
- Create case definitions and analytic algorithms to apply these definitions in a consistent and uniform manner across data sources;
- Develop appropriate methodologies to analyze data;
- Provide estimates; and
- Develop a dissemination plan.
Researchers, scientists, public health departments, community and local public health administrators, the vision community and change agents will use the data resulting from such a system, according to the CDC.
“This is an amazing opportunity to build a national surveillance system,” David B. Rein, PhD, of NORC, said during the webcast.
“The question to ask is whether the system we’re developing is going to give us more information than we currently have and give us a basis on which to grow and develop our community’s knowledge into the future,” he said.
The CDC and NORC are currently partnering with the University of Wisconsin School of Medicine, VSP, Prevent Blindness and HIV Counts, an independent surveillance consulting organization, Rein said.
The aim of the project is to create new visual health, epidemiological and service utilization estimates for the nation and subpopulations, he said, including diagnosed prevalence of low vision, blindness and selected eye disorders.
The system must also be sustainable, updatable and adaptable, Rein said.
The data exists, but the system must be built, he said. The project participants must determine the conditions to include and how to categorize them, identify potential data sources, identify and define measurement indicators, establish data sources for acquisition and identify public sources for analysis.
“Once we have these systems, we want to apply common measurement indicators across the datasets to generate single source estimates,” he said.
NORC’s John Wittenborn also shared his insight on the project during the webcast.
“We want to ensure we’re not operating in a vacuum,” he said. “This system is for the entire vision and eye health community. We want to ensure scientific credibility and oversight, so we established an expert advisory panel chaired by Paul Lee, MD, JD, of the University of Michigan.”
Existing data sources include federally supported national surveys, administrative claims databases, electronic health records, electronic medical record databases, health registries, population-based studies and meta-analyses, he said.
“There are 16 national surveys with vision or eye health content,” Wittenborn said. “We discovered it’s not easy to wade through this – all the questions are different and they may change year to year; every survey is different; methodologies are different.”
Eye care registries
Wittenborn said the American Academy of Ophthalmology’s IRIS Registry is groundbreaking.
“It’s a paradigm shift in what you can measure,” he said. “For the first time you have a data set where you have full service utilization and visual function information for patients with almost all payers in one data source, including the uninsured, which you can get in claims data.
“Also, the American Optometric Association is developing a registry focusing on optometry (MORE) – it’s in the early stage,” Wittenborn continued. “We are communicating with AOA to observe the development of their registry. Next year is when they’ll start launching additional content. Between these two systems, we believe we will eventually capture the majority of eye care, which is pretty revolutionary.”
Wittenborn said these various categories of data have different measures, and the National Vision and Eye Health Surveillance System wishes to measure prevalence of eye disorders, utilization and attributable outcomes.
Wittenborn said the project will start with prevalence estimates and then move toward utilization, specifically, examination rates.
“There are massive disparities in eye care service utilization,” he said. “VSP has spent years looking at this and they realize there are large swaths of this country where there are no providers and some people get no eye care.”
The data analysis will comprise two steps: single source estimates and combining individual data sources. Wittenborn said they will look for harmonization when combining individual data sources.
“We can’t merge it,” he said. “Harmonization is if you get the same measure in different data you can put it together.”
Then multiple data sources will be put into one statistical model to create one data table of all important indicators nationally, by state and by county, Wittenborn said.
“Attributable outcomes is the last outcome measure and will answer: ‘Why does this matter?’” Wittenborn said. “Does it cause falls or injuries or depression or lower productivity? Ultimately, these might be the most important measures to capture.”
“All this data is worthless unless we can communicate this in a way in which it can be used,” he said.
The dissemination plan starts with Prevent Blindness and the CDC website, Wittenborn said, beginning with simple reports, then summary tables, then more sophisticated maps and queries, in addition to traditional scientific publications and presentations. – by Nancy Hemphill, ELS, FAAO
- Saaddine J, Rein D, Wittenborn J. Talk presented at: Focus on Eye Health National Summit; July 13, 2016; Washington, DC. http://www.preventblindness.org/summit-agenda-and-presentation-files. Accessed August 15, 2016.
- For more information:
- David B. Rein, PhD, is a program area director with NORC at the University of Chicago. He can be reached at email@example.com.
- John Wittenborn is a senior research scientist with NORC. He can be reached at firstname.lastname@example.org.
Disclosures: Rein and Wittenborn are employed by NORC.