People with direct or indirect lived experience of low vision and eye disease are the reason CERA exists – and building pathways to and improving how they contribute to research and clinical trials, can have a profound impact on the outcomes we achieve. 

“Researchers are experts in their fields and consumers are experts in their lived experience,” says Kelly Schulz, Consumer Involvement and Advocacy Lead at CERA. 

“It’s a synergetic relationship. By bringing those two things together, we can ensure our research achieves the greatest possible impact.” 

After starting in late 2023, Kelly will be establishing a consumer voice in all CERA’s research efforts, from basic discovery science in laboratories to clinical research through Cerulea. 

Through a program of strategic engagement and co-design, consumers will collaborate with researchers to provide valuable insights that strengthen the way research is planned, executed and ultimately translated into clinical practice. 

Curiosity brings opportunity 

Kelly comes to CERA from a career in senior consumer-centric roles in the corporate sector and is an experienced non-executive director across not-for-profit and government.  

She was also born with inherited retinal disease and has been legally blind from birth identifying as: “blind, with just enough vision to be dangerous.”

Guide Dog Velvet is Kelly’s navigation advisor and is also a very welcome addition to the CERA office. 

An innate sense of curiosity, plus her lived experience of vision loss, has driven Kelly towards improving human experiences. 

“The worst thing you can say is: ‘We do something because that’s the way we’ve always done it’,” she says. 

“There’s always an opportunity to look for incremental improvements, especially when it comes to things that fundamentally impact people’s experiences and quality of life.”  

Kelly uses the example of participating in clinical trials. 

“The difference between the ultimate success and failure for treatments being testing in clinical trials could be whether consumers are happy for a weekly treatment versus a daily treatment, for example,” she says.

“It’s a balance between the effort and inconvenience, and the perceived or real benefit – and that’s why we need consumers directly involved in developing the treatment protocols.” 

Creating synergies

Kelly will be leading the establishment of CERA’s Consumer Involvement Program, which will include a Consumer Advisory Group.

People with diverse experience of low vision, eye disease and blindness will work alongside advocacy group representatives and researchers.  

“The Advisory Group will provide strategic advice on the relevance and impact of CERA’s strategy, and it’s scientific work, ensuring research outcomes meet the needs of consumers and the wider community,” says Kelly.  

Consumers will be brought in to work in a co-design capacity with CERA too, where they will be able to influence and participate in defining moments throughout the research process.  

Whether researchers are coming up with great ideas, conducting clinical trials or translating research into real-world outcomes for the community, there is a role for collaboration with consumers.  

“There’s a lot to learn on both sides of research, and the first step is getting people together,” Kelly says. 

“I’m aiming to build a consumer consciousness throughout CERA so that, in years to come, it’s a natural part of who we are and intrinsically in everything we do.” 

This story was originally published in People in focus: Annual Review 2023.