Date and location: April 11, 2023; Bethesda, Maryland
Sponsors: National Eye Institute (NEI) and the National Institute on Minority Health and Health Disparities (NIMHD)
Workshop participants.
The National Eye Institute (NEI) and the National Institute on Minority Health and Health Disparities (NIMHD) convened the Vision Health Equity Workshop on April 11th, 2023, in Bethesda, Maryland. The workshop engaged a multidisciplinary panel of experts from vision health and health disparities fields to collectively review current research; and identify knowledge gaps, potential barriers, and opportunities to address disparities across vision health fields of study.
Background
The United States Centers for Disease Control and Prevention estimates that 90 million Americans aged 40 years and older have eye and vision problems. The majority of resultant visual impairments and blindness are preventable (e.g., diabetic retinopathy) or treatable (e.g., cataract and uncorrected refractive error). Yet, there remains a disproportionate burden of eye and vision diseases among populations experiencing health disparities. In addition, utilization, quality, and access to health care (inclusive of eye care) and rehabilitative services can be suboptimal or variable for many populations, including people with visual impairment or who are blind.
In 2021, the NEI published the National Eye Institute Strategic Plan: Vision for the Future (2021-2025). The strategic plan includes public health and health disparities research as one of seven core areas of emphasis. The NEI recognizes that eliminating vision loss and improving quality of life for all involves health equity – the continual process of assuring that all individuals or populations have optimal opportunities to attain the best health possible. Accordingly, the NEI partnered with the NIMHD to hold the National Institutes of Health’s first-ever workshop focused on vision health equity.
Workshop Purpose and Objectives
The workshop provided a forum for which to communicate expectations of vision research to advance health equity. Participants shared insights on:
- Challenges to understand the causes of and how to address vision health disparities
- Strategies to integrate social and structural determinants of health into vision health research
- Opportunities for future research into improving vision health across populations
Participants
Twenty-five invited workshop participants convened in-person to deliberate on issues central to the intersection of vision health disparities and interventions to promote vision health across populations. The ensemble comprised researchers from the eye/vision community and scientists focusing on health disparities research. Participants had expertise in ophthalmology, optometry, family medicine, community health, public health, rural health, behavioral research, health services research, health economics, clinical trials, epidemiology, and regulatory science. NEI and NIMHD leadership and staff members coordinated, facilitated, and contributed to the workshop.
Summary of Discussion
The workshop comprised two main sessions focused on vision health: (1) Etiology of Health Disparities and (2) Interventions to Advance Health Across Populations. Participants from each field shared information on the unequal burden of eye diseases in various underserved or under-resourced populations, the state of the science on what is known, the fundamental causes of health disparities, best practices and strategies that have shown promising results from the field of health disparities, and how these lessons learned can inform vision health and engaged in discussions describing potential new opportunities for vision health equity research.
Important themes that emerged from the discussions include the following:
- Framework-based, Multi-level Approaches: Recognize that drivers of vision health disparities are multi-domain (e.g., biological, social, environmental, sociocultural, and systemic) and multi-level (e.g., individual, interpersonal, community, societal). Identify how frameworks help design interventions that target “upstream” (e.g., housing, employment, education and other community or societal levels of influence) and “downstream” (e.g., behaviors, biology, treatment for illnesses, and other individual factors) drivers of vision health. See NIMHD Research Framework Details (nih.gov).
- Interdisciplinary Collaborations: Bring together varied professional disciplines and patient-level lived (subjective) experiences into research planning and model development. Integrate expertise in social, behavioral, biological, environmental, implementation, and dissemination sciences, along with health policy, management, and economics with vision research.
- Community Engagement: Embrace approaches that empower researchers, organizations, and community members to participate (e.g., community-based participatory research) in vision research. Build trust and understand contextual factors affecting engagement, adoption, and adherence to vision health interventions. Strengthen community-clinical partnerships to optimize prevention strategies and improve vision health outcomes.
- Telemedicine and Assistive Technology: Explore the use of telemedicine, digital health, and assistive technologies to address access barriers to eye care and the delivery of vision health services. Research new strategies for early detection and management of diseases affecting vision health specifically for low-resource settings. Develop or refine tools that enable functional independence for people who are blind or visually impaired.
- Mind the Data Gap: Close data deficits by disaggregating data collection and enhancing collection of data from populations experiencing health disparities and/or disabilities. Recognize situations where there may be more variation within groups and populations than between groups and populations. Support the collection and analysis of disaggregated data to understand disparities in vision health outcomes among different racial and ethnic groups and populations (e.g., race versus ethnicity). Leverage opportunities to use causal inference and mediation analyses to evaluate vision health disparities.
- Vision Screening and Eye Exams: Examine the effectiveness of and leverage the utilization of community-based or school-based vision screenings as strategies to enhance early detection and disease management. Explore reasons patients (or parents/guardians) do not follow-up with referrals when screening indicates there is a vision disorder and ways to mitigate the disconnect. Investigate approaches to communicating, packaging, and delivering preventive services to communities that need them most.
- Clinical Trials to Decrease Vision Health Disparities: Continue efforts to engage historically underrepresented populations in vision research and clinical trials. Develop retention strategies to ensure participant engagement throughout the trial lifecycle (e.g., planning, conduct, data collection, analysis, and dissemination). Recognize that “one size” does not fit all; standardization can limit vital cultural adaption. Recognize that interventions may need to be adapted so that they better align with the norms, beliefs, values, and practices of specific groups or communities, and messaging about their implementation may need to be tailored (individualized) to better promote health behavior change. Build infrastructure to keep clinical trials patient-centered and outcome measures harmonized—the ability to integrate and harmonize different types of data from rigorously designed studies provide important insights into challenges related to vision health disparities.
- Workforce Training and Development: Provide education and training across disciplines in areas such as social determinants of health, epidemiology, clinical trials, causal inference, health policy, behavioral health, community engagement, among others. Shift from addressing vision health disparities via primarily biomedical, pathological, or “one disease at a time” models to a more integrative, broader population-based vision healthcare and prevention perspectives.
In summary, vision health is part of overall health. The NEI and NIMHD brought two different fields of experts from vision health and health disparities research together and created a collaborative space to learn and discuss the state of the science, research gaps and future opportunities to promote vision health across populations. Participants highlighted a need for interdisciplinary, community-engaged research collaborations to reduce disparities.