This World Sight Day, Retina International is proud to launch our new campaign, Patient Voices: Deciding Our Futures, an initiative focused on protecting and promoting the role of the patient voice in health innovation.
For decades, the retinal community has worked tirelessly to secure a place for patients at the decision-making table; shaping research priorities, influencing policy, and ensuring that innovation reflects the realities of those it seeks to serve.
However, emerging legislative changes in the EU and beyond now threaten to reduce or even remove the formal inclusion of patient representatives from health innovation frameworks. At Retina International, we believe that silencing the patient voice would be a serious setback, not just for our community, but for innovation itself.
Our campaign stands firmly in solidarity with the joint EURORDIS and European Patients’ Forum initiative Keep Patients Voting, which calls on policymakers to safeguard the participation of patient advocates in decision-making processes across health and research.
When patients are included, innovation is stronger, more relevant, and more equitable. The lived experiences of individuals affected by retinal diseases provide critical insights that shape more effective policies, improve research outcomes, and drive meaningful change.
“The patient voice has proven its value again and again. When patients contribute to decisions, research becomes more focused on real needs, and innovation delivers tangible benefits to the people it’s meant to serve.”
– Avril Daly, CEO of Retina International
To launch Patient Voices: Deciding Our Futures, we are proud to feature Leighton Boyd, Chair of Retina Australia:
Image description: A social media graphic from Retina International’s “Patient Voices: Deciding our Futures” campaign. It features a black-and-white portrait of Leighton Boyd, Chair of Retina Australia, smiling and wearing a light shirt. Next to his image is a quote that reads: “When patients have a voice in establishing policy, programs and systems are better designed to meet real-world needs.” The Retina International logo appears in the top right corner, and at the bottom is the campaign hashtag #KeepPatientsVoting.
Leighton is personally affected by Retinitis Pigmentosa and has dedicated over forty years to advocacy within the vision loss sector. His leadership has helped ensure that people living with inherited retinal diseases have access to the information, support, and networks they need to live empowered lives.
Reflecting on his experience, Leighton shares:
“When patients have a voice in establishing policy, programs and systems are better designed to meet real-world needs. Patient perspectives bring lived experience to the table, helping decision-makers understand what truly matters in care and innovation.”
He continues:
“When patients are heard, research becomes more relevant. It focuses on meaningful outcomes that can change lives.”
The retina research space remains one of the most innovative fields in health research and development, but innovation must remain patient-driven. Throughout this campaign, Retina International will share stories from patients, clinicians, and advocates around the world who exemplify the power and impact of patient participation in innovation.
Follow the campaign using #PatientVoices and #KeepPatientsVoting, and stay engaged as we amplify the voices that continue to shape the future of retinal research and care.
