Sixty dedicated members of the community are making sure research at CERA meets the needs of people living with vision loss and blindness
29 April 2026
Members of the community with vision loss and blindness are driving CERA's research to new heights through the development of content and input on research projects.
Their invaluable input has helped to develop accessible practical applications for our research in the areas of cell reprogramming and artificial intelligence (AI), retinal imaging and gene therapy for inherited retinal diseases (IRDs).
Three of our Consumer Program members were also involved in the development and design of the age-related macular degeneration (AMD) participant survey - the aim of which was to capture perspectives on the way in which treatments are currently delivered and the barriers that prevent accessing and receiving treatments.
"Collaboration with our consumer research partners facilitated the development of targeted, refined survey questions.
This partnership significantly enhanced our ability to gather critical information that may have been overlooked without their expert input," says CERA Principal Investigator Dr Flora Hui.
Invaluable community engagement
People are at the heart of everything we do here at CERA and working alongside people with vision loss and blindness to improve and support our research ensures those with lived experience are heard.
CERA's Consumer Program has been established to make sure that we implement and undertake research that meets the priorities of the community it hopes to benefit from it.
An essential feature of the program is the Consumer Advisory Group, which ensures that the voices of those with lived experiences of eye disease are not only heard, but actively help shape the direction of our research.
In 2025, 39 consumer research partners – joined by advocacy organisation members and representatives of our researcher community – participated across 9 projects, and eleven members are now embedded into CERA's research teams.
CERA's Consumer Program integrates the insights, experiences and perspectives of people living with eye diseases directly into our research processes – producing and building on research that is not only scientifically rigorous but also relevant and beneficial for the wider community.
"When we started looking at the way that our researchers share their important work- whether that be updates on progress or inviting participants into our clinical trials - we knew that a more strategic and focused approach was needed," says Fleur O'Hare, CERA's Consumer Involvement and Advocacy Lead.
"CERA's Consumer Program emerged out of this examination of best practice approaches to our research, and it's led by those who it affects most - people in the community with lived experiences of vision loss and blindness.
"Their involvement is critical to ensure that our research addresses real-world needs and priorities," she says.
Building a future together
The ethos of the Consumer Program extends beyond the work at CERA.
"We want to do what is best for those we are all trying to help and sharing resources we have developed on our website for everyone to access is a great start," says Fleur.
It's a sentiment echoed by Consumer Advisory Group committee member Honorary Professor Colleen Lewis, who has lost vision in her left eye from dry AMD and has wet and dry AMD in her right eye. Honorary Professor Lewis, whose research focuses on the politics of accountability at the Australian National University (ANU), says that both researcher and consumer have a common goal.
"We want to find cures for eye diseases. We all want to ensure that CERA's research addresses real-world issues whilst enhancing the accessibility and relevance of our findings, so that everyone has a chance to benefit from it," she says.
"Please think about joining the Consumer Program if you are a person with lived experience of eye disease and help us to guide research that matters most to people with vision loss and blindness."
