A Vision for All: Bridging Equity Gaps in Eye Health Research

U.S. Advancing Inclusive Research Site Alliance Expands Into Ophthalmology

In 2021, Genentech partnered with four oncology clinical research centers to launch the Advancing Inclusive Research® Site Alliance to improve access for underrepresented populations in clinical studies. This first-of-its-kind coalition was created to test recruitment and retention approaches and establish inclusive clinical research best practices that can be leveraged across the biopharmaceutical industry. Recently, we added two more oncology centers and expanded into ophthalmology to address disparities faced by patients of color in this disease area. Our three ophthalmology research sites—Wagner Kapoor Institute in Virginia, Charles Retina Institute in Tennessee, and Retina Consultants of Texas—seek to improve eye health for all patients and have a proven track record of recruiting and retaining patients of color in clinical research.

Kapil Kapoor, MD, FACS, FICS, FASRS Ophthalmologist and Eye Surgeon, President of Research, Wagner Kapoor Institute

“This Alliance is working collaboratively toward a common goal of achieving diversity and inclusion in clinical trials,” says Dr. Kapil Kapoor, President of Research at the Wagner Kapoor Institute in Norfolk, Virginia. “By understanding each other’s unique approaches to success in our niche fields and geographies, we are better able to understand what can optimally scale to a more universal solution for other research partners at large.” Dr. Kapoor’s approach is mission-driven, insisting on providing access to care for all patients with sight-threatening diseases. Clinical research is critical to delivering on this goal, and as a result, he has developed many creative avenues to reduce access and participation barriers for underserved patients. This includes having mobile ophthalmology vans to both diagnose and treat patients where they are.

Dr. Jeremiah Brown, Vitreoretinal Surgeon, of Retina Consultants of Texas in San Antonio, Texas, also champions diversity and inclusion in clinical research. His commitment stems from observing that health outcomes vary across populations. By ensuring representation from diverse backgrounds, we can uncover treatment nuances. “Diversity and inclusion are important in clinical trials because we want our results to be reflective of the entire population, there are many examples in medicine of particular treatments being effective in certain populations and not as effective in others. We need to identify these variations so that we can develop the most effective treatments for our patients.”

The AIR Site Alliance, in its commitment to inclusivity, is enrolling Black and Hispanic/Latino populations twice as fast compared to their peers in the same studies.1,2 This proactive approach aligns with the principles advocated by our site champions. By prioritizing diverse participation and patient-centered care, they collectively contribute to advancing clinical research and ensuring equitable access to medical advancements.

Jeremiah Brown, Jr., MS, MD Vitreoretinal Surgeon Retina Consultants of Texas

For Dr. Brown, reaching underserved patients boils down to a series of actions designed to educate patients on the benefits of clinical research. As a best practice, he makes participation in clinical studies simple for potential participants, supporting his patients' needs for flexible scheduling and translation support through the informed consent process, to reduce barriers to participation. Dr. Brown’s hiring practices mirror his beliefs. He understands that patients are more likely to participate in research if they interact with a diverse clinic staff. Hiring bilingual staff has proven to be instrumental, along with community engagement activities that offer health-related topics through printable brochures available in local churches and during health fairs.

Similarly, Dr. Stephen Huddleston of the Charles Retina Institute in Germantown, Tennessee contends that inclusive research is crucial to the care journey. “More diverse studies better reflect the populations we serve and provide a direct benefit to our patients.” Dr. Huddleston believes in an approach that prioritizes patient care over profit and never turns a single patient away.

Stephen Huddleston, MD Vitreoretinal Surgeon Charles Retina Institute

We continuously strive to understand and address the social drivers of health inequities and build community trust through our AIR Site Alliance and beyond. In diabetic macular edema (DME), we developed our landmark Phase IV clinical study, ELEVATUM, in collaboration with ophthalmologists from diverse backgrounds and patient advocacy groups. This study focuses on removing barriers to participation for historically underrepresented patients, which is essential for decreasing disparities in the incidence of blindness stemming from DME.

This journey has only just begun, and our unwavering commitment continues to drive progress toward a healthier future for all patients.

Click here to learn more about our External Partners to advance inclusive research.