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By Roxann Mayros, President of VisionServe Alliance
For nonprofit agencies serving people with vision loss, there is a need to know the size of the population, characteristics, and needs of people with vision loss at the population level in the nation, state, and community. That knowledge would allow agencies to define “gaps” in the community, so that agencies can compete effectively to respond to consumer needs and compete for scarce resources to provide services.
The model for many rehabilitation agencies is one in which provision of services does not lead to income. Rather the agency raises funds (in a variety of ways) and provides services to the extent these funds allow. Invariably, the problem begging for a solution is that an influx of clients does not lead to an influx of income.
The solution lies in gathering better data. With better data, there is the possibility that our field could advocate to increase federal funding for older individuals who are blind, Congress could approve Medicare reimbursement for vision rehabilitation professionals, or large foundations could fund a national service delivery system.
So, how do we find out how many people need vision rehabilitation services?
In the past, there have been multiple paper-based surveys that have asked questions in a variety of inconsistent ways about vision, eye diseases, and function; therefore, estimates differ greatly. For example, one survey asked, “Can you read the newspaper?”, without defining whether they could read with glasses or without, whether the person is literate, or speaks a different language than the paper is written in. Because every survey asks questions about vision loss in different ways, there are a variety of numbers to use. So, when people ask me how many “blind” people there are, I say, “How many do you want there to be, and I’ll find a study to support it.”
Now though, with advanced data base management, researchers can gather data from a variety of sources such as electronic health records and the American Academy of Ophthalmology’s Iris Registry, to present data about vision and eye health that is state and county level specific. The CDC’s Vision Health Initiative (VHI) and NORC at the University of Chicago have taken the lead in developing a new tool called the National Vision and Eye Health Surveillance System (VEHSS). The VEHSS leverages new and existing data sources to help health professionals, researchers, policy makers, and patients understand the scope of vision loss, eye disorders, and eye care services in the United States. VEHSS is intended to grow and improve over time based on input and needs of the vision health community.
I encourage you to visit the Vision & Eye Health data portal at https://www.cdc.gov/visionhealth/visionhealthdata/index.html to create your own filtered dataset, customize visualizations, download data, and more. Here are just some of the things you can do:
- Identify and collect existing sources of information on vision and eye health.
- Create case definitions to analyze data consistently.
- Analyze data to estimate:
- The prevalence of eye disorders and disabilities.
- The use of eye-health services.
- Health disparities in visual health treatment and outcomes.
- Investigate methods to leverage multiple existing data sources to create new estimates of the prevalence of vision loss and eye disease.
- Disseminate the information developed by the system to key stakeholders and respond to feedback to continually improve the quality and usefulness of the system.