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Vision Health Equity Workshop - April 11, 2023 - Executive Summary

Date and location: April 11, 2023; Bethesda, Maryland
Sponsors: National Eye Institute (NEI) and the National Institute on Minority Health and Health Disparities (NIMHD)

Participant group photo - high res

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 and promote equity in 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 (e.g., persons of racial or ethnic minority, persons with less privileged socioeconomic status [SES], and/or the intersectionality of these identities with rural populations or sexual and gender minority groups or persons with disabilities).  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:

  1. Challenges to understand the causes of and how to address vision health disparities
  2. Strategies to integrate social and structural determinants of health into vision health research
  3. Opportunities for future vision health equity research 

Participants

Twenty-five invited workshop participants (below) convened in-person to deliberate on issues central to the intersection of vision health disparities and interventions to promote vision health equity. 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 Equity. 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:

  1. Social and Structural Determinants of Health and Vision Research:  Assess and understand the impact of social determinants of health (SDOH) on vision health, i.e., the conditions in which people are born, grow, learn, work, play, live, and age and the broader set of structural factors shaping the conditions of daily life (e.g., social, economic, and legal forces, systems, and policies that determine opportunities and access to high-quality jobs, education, housing, transportation, food, and health care). Investigate how structural racism, implicit biases, and ableist behaviors perpetuate vision health disparities. 
  2. 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).
  3. 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. 
  4. 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. 
  5. 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. 
  6. Mind the Data Gap:  Close data deficits by disaggregating data collection and enhancing collection of data from populations experiencing health disparities and/or disabilities and maximizing data justice. 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. 
  7. 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.
  8. Clinical Trials to Promote Vision Health Equity:  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 vision health equity challenges.
  9. 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 equity. Participants highlighted a need for interdisciplinary, community-engaged research collaborations to reduce disparities and promote equity. 

Workshop Participants

Erin Kobetz, Ph.D., M.P.H. (Workshop Co-Chair)
University of Miami

Stephen McLeod, M.D. (Workshop Co-Chair)
American Academy of Ophthalmology
University of California, San Francisco

Eduardo Alfonso, M.D.
University of Miami 

Heather Anderson, O.D., Ph.D.
The Ohio State University

Zinzi Bailey, ScD, MSPH
University of Miami 

Paula Anne Braveman, M.D., M.P.H.
University of California, San Francisco

Neil S. Calman, M.D., MMS
Institute for Family Health

Megan E. Collins, M.D., M.P.H.
Johns Hopkins University 

Susan Anne Cotter, O.D., M.S.
Marshall B. Ketchum University

Leonard E. Egede, M.D., M.S.
Medical College of Wisconsin

Angela Elam, M.D.
University of Michigan

Darrell J. Gaskin, Ph.D., M.S.
Johns Hopkins University

Christopher A. Girkin, M.D., MSPH
University of Alabama at Birmingham

Emily W. Gower, Ph.D.
University of North Carolina at Chapel Hill

Eve Juliet Higginbotham, SM, M.D., ML
University of Pennsylvania

Leslie Hyman, Ph.D.
Thomas Jefferson University

Charlotte Enns Joslin, O.D., Ph.D., FAAO
University of Illinois at Chicago

Yao Liu, M.D., M.S.
University of Wisconsin-Madison

Electra Paskett, Ph.D.
The Ohio State University

Pradeep Ramulu, M.D., MHS, Ph.D.
Johns Hopkins University

Ken Resnicow, Ph.D.
University of Michigan 

JR Rizzo, M.D., MSCI
NYU Langone

Michelle Tarver, M.D., Ph.D.
U.S. Food and Drug Administration

Chau Trinh-Shevrin, DrPH
NYU Langone

Robert Andrew Winn, M.D.
Virginia Commonwealth University

NIH Leadership and Staff

Michael F. Chiang, M.D.
National Eye Institute

Santa Tumminia, Ph.D.
National Eye Institute

Eliseo J. Pérez-Stable, M.D.
National Institute on Minority Health and Health Disparities

Kathleen C. Anderson, Ph.D.
National Eye Institute

Donald Everett, M.A.
National Eye Institute

Shefa Gordon, Ph.D.
National Eye Institute

Dustin Hays
National Eye Institute

Brian Hoshaw, Ph.D.
National Eye Institute

Nancy Jones, Ph.D.
National Institute on Minority Health and Health Disparities

Nathan Stinson Jr., M.D., Ph.D., M.P.H.
National Institute on Minority Health and Health Disparities

Workshop Organizing Committee

Houmam Araj, Ph.D.
National Eye Institute

Sangeeta Bhargava, Ph.D.
National Eye Institute

Rina Das, Ph.D.
National Institute on Minority Health and Health Disparities

Jimmy T. Lê, ScD, M.A.
National Eye Institute

Phuong-Tu Lê
National Institute on Minority Health and Health Disparities

Carolina Vanessa Solis Sanabria, M.D., M.P.H.
National Institute on Minority Health and Health Disparities

Cheri Wiggs, Ph.D.
National Eye Institute

Sundania J.W. Wonnum, Ph.D., LCSW
National Institute on Minority Health and Health Disparities 
 

 

For questions, contact Jimmy T. Le, Sc.D., M.A., jimmy.le@nih.gov. 

Last updated: October 27, 2023