WHY IS HEALTH EQUITY SO MEANINGFUL TO YOU PERSONALLY AND SO IMPORTANT FOR THE BROADER HEALTHCARE COMMUNITY?
“I practice in Baltimore City and it's a city that has approximately two thirds of the population from black or Hispanic origins, and I get to see firsthand some of the devastating effects of eye disease that affects populations from these backgrounds disproportionately. Not only do patients from historically underrepresented populations have higher risk of blinding eye disease from devastating diseases such as diabetic retinopathy, diabetic macular edema and glaucoma, but even treatable diseases such as cataract amblyopia refractive error, and it's one of the most heartbreaking things to see personally when you have a patient in front of you that simply has a disease in which requires major surgery or a major intervention when you know that early intervention or detection could have actually saved the person's sight.” - Dr. Adrienne Scott, Medical Director at the Wilmer Eye Institute, an associate professor at Johns Hopkins, and Elevatum study investigator
HOW CAN PROVIDERS BUILD TRUST WITH PATIENTS?
“I think the best thing we can do is to build a relationship on the medical treatment of patients and not on research. I think patients come to us for care. And then we have to develop trust in our therapies for them so they can see the benefit. Once you do that, patients are willing to listen to you… There really are concerns in underrepresented patients in clinical trials. Not that they don't want to participate. They just don't know enough about it to participate and make a good decision. So I really think that relationship is very important.” - Dr. Keith Carter, chairman and head of Ophthalmology and Visual Sciences at the University of Iowa and past-president of AAO
ARE THERE STEPS THAT THE OPHTHALMOLOGY COMMUNITY CAN TAKE GLOBALLY TO IMPLEMENT ACTIONABLE CHANGES NOW AND IN THE FUTURE?
“Perhaps one way would be to start with the investigators, principal investigators as well as the sub investigators… We should not simply select white investigators serving white populations in high income areas, just because that site is a high enrolling site. We should be more inclusive and diverse and comprehensive and understanding of the communities where the investigators work and which patient population they serve… If the investigator is from my community and knows me and has been serving my family, my relatives, I may be more likely to listen and understand why it is important to participate in a clinical trial and more likely to remain enrolled through the end of the study.” - Dr. Judy Kim, president of ASRS and professor of ophthalmology at the Medical College of Wisconsin
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Ophthalmology leaders offer their responses to the challenge of attaining equitable care for all
Part of taking a step forward is having meaningful and open conversations. Genentech and leading ophthalmology experts came together to discuss barriers to eye care and improving diversity, equity and inclusion in research during a LinkedIn Live panel, with opening remarks from Ophthalmology Principal Medical Director, Dr. Daniela Ferrera. We convened three leaders in ophthalmology to share their perspectives around inequities in access to care, diversity in clinical trials, and how we can collaborate across the field to address these challenges: Dr. Judy Kim, president of ASRS and professor of ophthalmology at the Medical College of Wisconsin; Dr. Adrienne Scott, Medical Director at the Wilmer Eye Institute, an associate professor at Johns Hopkins, and Elevatum study investigator; and Dr. Keith Carter, chairman and head of Ophthalmology and Visual Sciences at the University of Iowa and past-president of AAO. Watch the full event here.
UNDERSTANDING THE PROBLEM
Time and again we see that the patients enrolled in clinical trials do not match the population of patients who are affected by the disease itself – and certainly not the population most affected or more likely to have poorer outcomes. With the incidence of diabetic eye disease and associated health disparities continuing to rise among different patient populations, the need to make clinical trials more diverse is all the more urgent – and may help address these health disparities in a more effective, equitable way.
ENSURING REPRESENTATION IN CLINICAL TRIALS
Increasing representation among participants in ophthalmology clinical trials is complex, but there are steps we can take now and in the future to address it. Encouraging greater diversity in clinical research and leading trials targeting historically underrepresented groups is one way to start. Being cognizant of trial design, including related aspects such as inclusion criteria, accessibility, and communication, might also support a more diverse group of participants.
BUILDING HEALTH EQUITY FOR THE FUTURE
Beyond building and executing more representative clinical trial research, there are other ways the healthcare community, with increased representation throughout the field of ophthalmology, can help ensure equitable eye care. This includes making screening for eye diseases more accessible in more communities, and supporting dialogue between patients, their loved ones and healthcare professionals.
At Genentech, we have witnessed the challenges of vision loss: how it can change lives, diminish freedom and disrupt opportunities for people to do what they love. We are committed to partnering across the ophthalmology community to increase representation in research so everyone can have a chance to preserve their sight and continue doing what’s important to them.
