Retina International’s new 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 Claudette Medefindt, Head of Science, Retina South Africa:
Image description:
Graphic titled “Patient Voices: Deciding our Futures” from Retina International. It features a portrait of Claudette Medefindt. Head of Science, Retina South Africa. The quote reads: “We need to ensure that the patient voice is escalated and any attempts to undermine this are strenuously opposed.” The Retina International logo appears in the top right corner, and a yellow banner at the bottom reads KeepPatientsVoting.
“We need to ensure that the patient voice is escalated and any attempts to undermine this are strenuously opposed.”
– Claudette Medefindt, Head of Science, Retina South Africa.
As part of our weekly Patient Voices: Deciding Our Futures campaign, we’re proud to feature Claudette Medefindt, who has been a dedicated advocate for the retinal community for more than 45 years.
Claudette has worked tirelessly to ensure that people living with inherited retinal diseases are not only represented but truly listened to, in research, clinical practice, and legislative decision-making.
She reminds us:
“The patient voice has largely been ignored in all areas of health, particularly in Western medicine and research. It is only recently that patient-reported outcomes (PROMs) are receiving their deserved attention.”
Citing the pioneering work of Professor Eliot L. Berson, Claudette adds:
“As Dr Berson said, ‘We ignore our patients at our peril.’ Patients are the experts in their own specific disease.”
Patient participation in health policy and research must never be taken for granted. When patients are part of decision-making, systems become more compassionate, research becomes more relevant, and innovation becomes more meaningful.
Through Patient Voices: Deciding Our Futures, Retina International stands with Claudette and advocates everywhere to KeepPatientsVoting, ensuring that the patient voice remains central in shaping the future of health 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.
