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The science of vision is advancing faster than we are addressing the societal impacts on vision health- leading to a need to include the Patient Voice in order to improve eye health. Every day there are new advances in eye disease research, improved understanding of disease causation and treatment, a fight for better vision and eye health policies, and greater efforts to ensure that treatments are available for the first time in rare vision conditions. While the advancements are many, the number of individuals impacted by eye diseases leading to vision loss and blindness continues to grow.
My attendance at the recent American Academy of Ophthalmology (AAO) meeting in Chicago, IL reminds me that we are fortunate to be living in an exciting time for eye health. During the AAO meeting, Prevent Blindness hosted an event convening patient and ally representatives along with our corporate and non-profit partners. At this event, we discussed the value that an educated patient has on eye health. The conversation explored topics such as: how to invite the patient voice from diverse and underserved communities in research; the role for community health educators and outreach workers in patient engagement; and how eye health education can be more person-centered. The patient and ally representatives from the panel had the opportunity to ask the audience members – representing industry, clinicians, and advocacy organizations – what more can be done to lift up the Patient Voice. The discussion underscored the need for more opportunities for patient engagement and education to reach diverse audiences.
What is meant by the term “Patient Voice”?
The term “Patient Voice” refers to the inclusion of patient and care partner perspectives, experiences, and priorities in healthcare decision-making, research, policy, and care design. It is a significant shift from traditional healthcare models where decisions were typically made by clinicians and researchers without direct input from the patients themselves. By inviting the Patient Voice, healthcare delivery is more patient-centered.
Here’s why the Patient Voice is important:
Empowers Patients: Involving patients in decision-making has a bi-directional impact. It can provide purpose and meaning to patients, while providing benefit to the organization or team eliciting their input. Downstream, it can also lead to better patient outcomes.
Improves Quality of Care and Quality of Life: The Patient Voice elucidates real-world challenges which can inform healthcare providers and organizations to create solutions that are responsive to expressed needs, practical, and sustainable.
Shapes Research and Policy: Patient and care partner insights guide researchers and policymakers to focus on issues that truly matter to patients, such as the ability to remain independent and a productive member of their community. It leads to improved quality of life, accessibility, and ease of treatment which benefits everyone. Here is a recent statement from staff at the National Academies of Sciences, Engineering, and Medicine in reference to a panel where Prevent Blindness ASPECT Program graduates shared experiences of applying for disability insurance while living with vision loss:
“The committee members and SSA [Social Security Administration] representatives were so grateful to hear your stories, which brought needed perspective and understanding to why we are doing this study. Please know that we so value your contributions, and we hope that after the committee’s report is published, SSA will be able to address some of the challenges you have brought up and make it easier for people to apply for disability insurance due to a visual impairment.”
Promotes Transparency and Trust: When patients feel heard, it fosters trust between patients and healthcare providers, which is essential for better treatment adherence and outcomes. Trust in healthcare providers remains a significant issue for key segments of the population. We must be purposeful in how diversity is brought to research, healthcare, policy formation, and program implementation to engender trust. Trust will also be earned if we are thoughtful about the populations we need to reach, the story being told, who is telling the story, and how it is being told. Presence and representation are cornerstones of building trust in a community and must be in place before we try to educate and impact a community.
Activating the Patient Voice: A Call to Action
We can all support patients in sharing their experiences through the following approaches,
At Prevent Blindness, we are committed to our mission of preventing blindness and preserving sight. As an organization grounded in public health principles, we want to advance the idea that healthy vision is possible and should be promoted throughout our broader approaches to individual and community health. We also understand that we must support individuals who experience vision loss at any degree to ensure they are able to have a high quality of life. We know that to be truly impactful, we must approach an issue in a humble manner, we must listen before we act; we must work with instead of for; and we must provide a path forward for those we have empowered. It is then that we have evolved, as an organization, from speaking on behalf of the patient to one that is truly patient-led.
