Retina International’s campaign, Patient Voices: Deciding Our Futures, is an initiative dedicated to protecting and promoting 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
For Patient Voices: Deciding Our Futures, we are proud to feature patient advocate Russell Wheeler:
Image description:
Graphic featuring a black-and-white portrait of Russell Wheeler, a patient advocate for the LHON Society, wearing glasses and a checkered shirt. The background is a gradient of dark blue and light purple. The text reads: “Patients need to be at the heart of this – to give their lived experience and to contribute directly to research, making it more focused and meaningful.” Russell Wheeler, Patient Advocate, LHON Society. At the top, there is a yellow banner that says “Patient Voices: Deciding our Futures,” and at the bottom, a yellow tag reads “#KeepPatientsVoting.” The Retina International logo appears in the top right corner.
“Patients need to be at the heart of this – both to give their lived experience (warts and all) to help the wider public, clinicians, and researchers understand vision loss better, and to contribute directly to research to make it more focused and meaningful.”
— Russell Wheeler, Patient Advocate, LHON Society
As part of our Patient Voices: Deciding Our Futures campaign, we’re honoured to feature Russell Wheeler, a dedicated advocate for people living with rare eye diseases through his work with the LHON Society, ERN-EYE, and EURORDIS.
Russell speaks candidly about how vision loss is still poorly understood by those who don’t experience it firsthand. While sight loss consistently ranks among the public’s greatest health fears, society often treats it as something people should simply “learn to live with.”
“Research into the causes and potential treatment for vision loss lags far behind where it needs to be and what would be justified by the frequently devastating impact it has when people lose vision – to say nothing of the economic impact it has on society at large.”
“This needs to change and it is long past time for ophthalmology to receive the funding and support that is required to bring about that change . Patients need to be at the heart of this – both to give their lived experience (warts and all) in order to help the wider public (and clinicians and researchers) understand vision loss better, and to contribute to the research directly to make it more focused and meaningful, leading to better treatments and outcomes.”
Russell reminds us that patients’ lived experiences must guide not just science, but also the policy and funding decisions that determine what progress is possible.
“Learning to live with sight loss is an important strength that is necessary for survival in this tough world in which we live. But perhaps sometimes those with visual impairment are a little too successful at this and it creates a false impression that lets off the hook regulators and others who could make that life better if only they could appreciate the implications and costs more. As a society we place a great emphasis on “Putting a brave face on things” but in some circumstances this can be counterproductive.”
His words capture the very essence of Patient Voices: Deciding Our Futures – the urgent need to protect and strengthen the patient voice in shaping the future of health innovation and vision research. Together, we must continue to #KeepPatientsVoting so that patient experiences remain central to every decision that affects their lives.
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.
