When it comes to medical research, diversity, equity, and inclusion need to be larger parts of the conversation. As it stands now, medical research can be fiercely hierarchical, expensive, and homogenous in terms of research subjects, failing to gather the necessary data for equitable drug development and access. Including diverse populations in clinical trials is crucial in ensuring that treatments are valid, safe, and effective across different demographics. By reflecting the heterogeneity of the real world, clinical trials can provide more accurate, reliable, and equitable healthcare solutions.

Assessing Healthcare and Trial Equity

Even though the NIH Revitalization Act (1993) mandated guidelines for women and racial minority groups in clinical studies, we have not yet reached the point where diversity is centered in many studies. Doctors like Dr. Jay Chhablani, MD, discussed this issue in equity during the Retina World Congress, which took place from May 9-12, 2024. According to reporting from Alex Young, Dr. Chhablani researched how these groups were represented in ophthalmologic studies, such as those performed in diabetic macular edema.

To begin, Dr. Chhablani and his team sourced data from multiple diabetic macular edema studies over a 19-year period, alongside demographic data from the U.S. Census and from the 2020 National Diabetes Statistics Report put out by the Centers for Disease Control and Prevention (CDC). From this information, the team gleaned that:

• Race reporting in studies was not as common from 2002-2011/12 as it was later. Further, the second decade was marked by lower levels of Caucasian patients and increases in Asian and Hispanic patients in clinical trials.
• Despite these increases, racial minority groups were still not well-represented in the clinical space. Hispanic, Black, and Asian patients were not only underrepresented in clinical studies as a whole, but in the ophthalmologic and diabetic research spaces.
• Doctors believe that study criteria could be one reason why patients are underrepresented. Other factors could include socioeconomic barriers, cultural differences, mistrust in the medical system due to historical injustices, and a lack of targeted recruitment efforts that address the specific needs of diverse communities.

Ultimately, this study showed how diverse patients are left out of diabetic macular edema research, which could contribute to worse outcomes. Providing the best care for patients means improving equity across the board.

About Diabetic Macular Edema

People with diabetes can develop a condition called diabetic retinopathy, which occurs when high blood sugar damages tiny blood vessels in the retina. These blocked and damaged vessels develop tiny bulges called microaneurysms. As these develop, fluid or blood is leaked into the retina, causing vision loss. The macula (part of the retina) begins to swell, leading to diabetic macular edema. Prevent Blindness shares that diabetic macular edema is the leading cause of new blindness within the United States. Diabetic macular edema may lead to difficulty seeing colors, straight lines appearing bent or curved, difficulty seeing with a glare or bright light, blurred or double vision, dark spots in your field of vision, floaters, or seeing an object as a different size when looking at it with just one eye or the other. Treatment includes managing one’s diabetes, anti-VEGF treatments, focal lasers, and corticosteroids.