At Prevent Blindness’ 13th Annual Focus on Eye Health Summit, keynote speaker Stacy Lee, a professor of law and ethics at Johns Hopkins University, highlighted how patient and caregiver voices can empower individuals in their health and eye care journeys. Following her keynote, a panel discussion featuring experts from the Glaucoma Research Foundation, the pharmaceutical industry, and academia explored ways to better incorporate the patient perspective in medical practice and research.*

The Patient and Caregiver Voice

Lee opened her keynote by sharing her personal story as a caregiver for her late father, who had glaucoma and Parkinson’s, and was on home dialysis. She recounted how her father’s experience navigating the health care system illuminated the daily struggles that many visually impaired individuals face. 

Despite his resilience, she said, he encountered significant challenges, such as inaccessible medical devices, and health care providers who overlooked the impact of his visual impairment on his treatment.

She emphasized that healthcare should be more inclusive, and not just treat a disease, but also accommodate a patient’s lifestyle and needs. She highlighted moments where care providers made a real difference, like an ophthalmologist who took the time to explain her father’s eye condition using a tactile model, helping him better understand his disease progression. 

Including the Patient Voice in Healthcare

After the keynote, an expert panel featuring Tom Bruner from the Glaucoma Research Foundation, Amy Megro from Ament Rare Disease, and Dr. Nazanine Hadarian, a researcher from the University of Texas Rio Grande Valley discussed the importance of including the patient and caregiver voices in healthcare decisions and medical research.

Bruner emphasized the power of storytelling in raising awareness among healthcare providers, adding that the Glaucoma Research Foundation has always prioritized patient involvement, with patients sitting on their board and participating in their educational efforts.

Megro shared insights from the pharmaceutical industry, explaining how patient feedback had reshaped a clinical trial at Ament Rare Disease, expanding the patient population and adding a new primary endpoint based on patient experiences. This approach, she argued, leads to better treatments that are more in tune with patient needs.

It’s essential to continually engage with patients to ensure accessibility in research, Hadrian stressed, since accessibility needs vary widely among visually impaired people. Her research on how blind and low-vision individuals experience stigma and ableism in healthcare settings highlights the need to include their voices in research and treatment design.

The Importance of Advocacy and Collaboration

The discussion wrapped up with reflections on how to continue advocating for patients and caregivers. The panelists agreed that:

• Healthcare professionals need ongoing training to better understand the unique needs of visually impaired individuals, and 
• Systemic change is necessary, from medical school curriculums to industry practices, to ensure that the patient voice is integrated into every aspect of care.

Healthcare should not be a matter of luck, Lee said, but rather a system where everyone, regardless of visual ability, has access to comprehensive, empathetic care.

*Prevent Blindness. (2024, July 10). 2024 Focus on Eye Health Summit: The Patient Voice) [Video file]. https://www.youtube.com/watch?v=gh_1ywIgupY&list=PLuXDO8Wh5lipHW4E_sD6aTvB6ClXj62Vm&index=8

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