Making Eye Health a Population Health Imperative Vision for Tomorrow (2016) / Chapter Skim
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4 Surveillance and Research
4 Surveillance and Research
Pages 163-190
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From page 163... ...
A systematic and ongoing collection of relevant data about risk factors, the determinants of visual health, care practices and related health outcomes is needed to determine the nature and extent of the public health burden of eye disease and vision loss; to identify risk factors and at-risk populations; to discover disparities in access, care, and outcomes; and to tailor interventions to the needs of the public (West and Lee, 2012)
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From page 164... ...
The determination of surveillance and research priorities should be similar to those used by Healthy People or Leading Health Indicators. Surveillance and research on eye health and vision impairment can be used for a number of purposes, including • Estimating the magnitude of the problem of vision impairment and the preventable burden; • Understanding the natural history of eye disease from a population health perspective; • Understanding how specific interventions halt the progression of disease from early to advanced stages; • Understanding the relationship between risk factors and eye health outcomes; • Documenting the existence of social determinants and policies affecting visual health; • Evaluating prevention and control strategies; • Detecting changes in health practice;
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From page 165... ...
The chapter explores the challenges in obtaining data about eye diseases and vision impairment, and identifies opportunities to improve surveillance and research. SURVEILLANCE There is no current surveillance method that accurately and comprehensively measures the total burden of visual impairment and eye disease.
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From page 166... ...
. National An annual survey that collects information about the use of Ambulatory Medical ambulatory medical services in the United States based on Care Survey the results from office-based physicians, who provide data (NAMCS)
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. National Profile A Web-based survey of local health departments (LHDs)
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From page 168... ...
" An optional diabetes module that has questions about eye exams and whether diabetes has affected the respondent's eyes, and an optional vision module that was used from 2005 to 2010 asked about difficulty seeing, the receipt of eye exams, and diagnosed eye diseases. The National Health Interview Survey (NHIS)
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From page 169... ...
First, the metrics used to assess vision impairment and eye disease vary among surveys. There are no standardized survey questions to measure vision or eye health, and, as a result, estimates of vision impairment and prevalence of eye diseases vary significantly.
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From page 170... ...
For example, NHIS had a vision supplement only in 2002 and 2008, NHANES has not consistently collected vision data since 2008, and the BRFSS vision module was discontinued after 2010. Patient Data Electronic Health Records An enormous potential for surveillance exists in electronic health records (EHRs)
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From page 171... ...
. Administrative Claims Administrative claims from private insurers, Medicare, or Medicaid are a source of surveillance data about vision and eye-related health status and care utilization.
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From page 172... ...
Challenges Although there is considerable quantitative and qualitative information about vision impairment and eye health available from myriad sources -- surveys, EHRs, and administrative claims -- each of these sources has its limitations. There is no existing surveillance system that systematically collects data to track prevalence, the incidence of new cases, and disparities in vision health in order to identify the causes of these disparities, to determine the stage of eye disease progression, and to develop and "monitor public health initiatives, programs, and policies aimed at reducing the burden of visual impairment and eye disease and eliminating existing disparities" (CDC, 2011a, p.
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From page 173... ...
National and state surveys and patient data systems collect some information about the presence of eye disease and vision impairment, but they fail to measure many other factors linked to visual impairment or eye disease. None of the surveillance methods discussed above measures the total burden of vision impairment and blindness, which includes the extent of visual acuity loss; the presence and stage of specific eye disease, comorbidities, and health-risk behaviors; social or physical limitations imposed by low vision; quality of life (QOL)
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From page 174... ...
. One population-based study analyzing the agreement between self-reported data and medical record for prevalence of eye disease and eye care utilization suggested national estimates tended to underestimate rates of eye disease and overestimate eye care utilization (MacLennan et al., 2013)
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Furthermore, data on eye and vision health are often inaccessible to those who are not subjectmatter experts, and it may be difficult for a policy maker or member of the public to easily find accurate estimates of vision impairment or eye disease (Wittenborn and Rein, 2016)
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From page 176... ...
Perhaps most importantly, coordination and collaboration among surveillance actors are limited. As a result, the nation lacks standard metrics for measuring vision impairment and eye health, there are limited sources for baseline data that can be used in surveillance and research, and significant hurdles stand in the way of integration or sharing between surveillance systems.
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From page 177... ...
Research builds on this data but is distinct in that it may include additional data on the causes and risk factors associated with vision impairment and eye disease, such as socioeconomic status, the presence of comorbidities, and access to eye care, and it may be used to 1 Funding reported is the actual amount from the Congressional Appropriations, prior to obligations for HIV research and transfer costs.
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From page 178... ...
Particularly important for the health of the population will be research that elucidates the effectiveness of population health interventions in preventing and reducing eye disease by addressing the underlying social determinants of health and primary and secondary prevention. Research can be performed by collecting original data, or through an analysis of existing data.
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From page 179... ...
For example, the Chinese American Eye Study sought to understand the prevalence of visual impairment and eye disease in Chinese Americans living in Monterey Park, California. Each of the 4,570 participants completed a questionnaire about health- and eye-related behaviors, risk factors, and their QOL, and underwent a clinical examination (Varma et al., 2013)
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From page 180... ...
. Similarly, a collaborative study between the Multi-Ethnic Pediatric Eye Disease Study and the Baltimore Pediatric Eye Disease Study used the same protocol and measurements to collect information on vision impairment from more than 10,000 children.
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From page 181... ...
Population health databases are used to track the health of a population of interest based on agreed-upon metrics. Although these databases rarely include measures specific to eye health, they may contain measures that are risk factors for poor eye health.
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These organizations provide funding to researchers to perform basic clinical, applied, and translational research about eye disease and vision impairment. However, there is no coordinating body or national agenda to help integrate and prioritize these activities, and thus each agency or organization operates independently.
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From page 183... ...
In addition to expanding and enhancing current surveillance instruments, surveillance should include other variables that would likely be helpful in identifying and characterizing important risk and protective factors for poor eye health. For example, along with prevalence and incidence data, a surveillance instrument could collect information on the determinants of eye health, including social and environmental determinants, and the impacts of eye disease and vision impairment.
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From page 184... ...
These methods of integrating data across settings and populations would give researchers access to rich, real-world data that could be used to improve our understanding and approach to visual impairment and eye health. To ensure that surveillance activities are aligned across agencies, methods, and geographic areas and to avoid duplicate efforts, more collaboration and coordination will be needed between and within the eye and vision health community, and among population health surveillance experts.
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From page 185... ...
• The absence of a surveillance strategy is an impediment to identifying and addressing challenges and opportunities for public health action. • Patient data captured from EHRs or administrative claims will not include information about the people who cannot or will not utilize care.
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From page 186... ...
CONCLUSION A systematic and ongoing collection of relevant data about risk factors, determinants of visual health, care practices, and related health outcomes associated with eye health and visual impairment is currently lacking. Currently information is drawn from an array of surveys, EHRs, and administrative claims data, but it is difficult to triangulate information from these sources because of inconsistencies in definitions, measures, and other problems inherent in data collection activities that are discordant or developed independently.
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From page 187... ...
2011a. Enhancing public health surveil lance of visual impairment and eye health in the United States.
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2003. Longitudinal rates of annual eye examinations of persons with diabetes and chronic eye diseases.
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2013. Medical record validation of self-reported eye diseases and eye care utilization among older adults.
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From page 190... ...
Paper prepared for the Committee on Public Health Approaches to Reduce Vision Impairment and Promote Eye Health. http://www.national academies.org/hmd/~/media/Files/Report%20Files/2016/UndiagnosedEyeDisorders CommissionedPaper.pdf (accessed September 15, 2016)
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