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"Walking together in kindness" artwork produced for Gold Coast Health by Riki Salam, We are 27 Creative.
Gold Coast Health’s Consumer Advisory Group (CAG) is celebrating 10 years of putting the community at the centre of healthcare decision-making.
With CAG members sitting on more than 70 hospital and health service committees and projects, the group has a growing reputation as a respected voice within Gold Coast Health.
Commencing with only a small group of past patients, the CAG has grown into a group of 17 dedicated community members who bring real-world experience, personal stories and a community perspective to the planning, design and delivery of health services across the Gold Coast.
CAG chair Letisha Living, a young stroke survivor, knows first-hand what it means to move through the health system and reflects on her experience as a catalyst for driving change.
"Before my stroke, I was very career driven, and after my stroke, I kind of lost my purpose, and I wanted to give back as well," she said.
Now leading the CAG, Letisha said the group gave her something she did not expect.
"It does give me purpose post stroke. It's a sense of belonging because everybody in the group is like-minded. Everyone's there for the same reasons: they want to give back, and they want to use their lived experience to help shape positive change," she said.
Letisha's impact speaks for itself. She's encouraged private areas for women experiencing pelvic pain in emergency departments, quiet spaces for neurodivergent adults and children, and is an active and co-investigator and co-author on a number of research projects.
As for CAG deputy chair Robert (Bob) Lee, he’s been a consumer advocate for more than 20 years, partnering with Gold Coast Health before the CAG was formally established.
Bob was a patient at Gold Coast University Hospital in 2005 and 2008 while being treated for non-Hodgkin's follicular lymphoma where he went on to take part in two clinical trials. He later joined the hospital's Human Research Ethics Committee and has continued a strong stride for inclusivity and research development.
Bob's partnership with Gold Coast Health stems from a desire to give back to the health service that gave him a second chance.
"A private hospital told me my lymphoma was terminal, and they'd send me to palliative care. When I went to Gold Coast Hospital, the attitude was completely different: They asked, 'Are you willing to participate in a clinical trial which we believe could help you?'" Bob said.
"I believe if I hadn't gone to Gold Coast Hospital, I would have died back in 2005. I wanted to give something back."
Bob now sits on more than a dozen committees. His role, he said, is not to bring clinical expertise but something equally important.
"I'm not a clinician. I don't have the expertise, but I do have the experience of talking to people and the lived experience of time in hospital," he said.
That perspective has driven the CAG's influence on some impactful initiatives, including sunflower lanyards for hidden disabilities, language name badges for multilingual staff, and a single Welcome to Country protocol for meetings - only a few accolades on the CAG’s growing list of achievements.
CAG founding chair Joan Carlini has seen the group grow from the ground up. Motivated by her own experience living with a chronic illness and growing up in regional Queensland where access to healthcare was limited, Joan said she understood early on how important it was to have a voice in the system.
"When we started, no one knew what CAG was," Joan said. "We were able to bring community voices into a previously employee-only health care system."
Joan spent eight years as Chair, helping establish the CAG as an independent consumer-led group and building the relationships and processes that allowed it to function as a trusted partner to Gold Coast Health. She said the most rewarding part of the work has been helping people with limited health literacy navigate a complex system.
"That is a privilege," she said. "Being able to improve the life of so many people through better communication and better access is something I am deeply proud of."
As Bob reflects, the biggest change over the past decade has been cultural – a shift in the acceptance of consumer engagement.
"In the early days, lived experience wasn't regarded as an advantage. They thought an ex-patient would just talk about their disease. But nowadays, with a focus on person-centred care, they recognise that a person is a patient some of the time but a person all of the time," he said.
Joan said she has seen that shift firsthand. More staff are now reaching out to partner with consumers. The result, she said, is a system that is less fearful and more collaborative, where patients are genuinely at the centre of decision-making.
As the CAG looks to its next chapter, its members remain driven by the belief that healthcare is better when the community has a seat at the table.
"If you've used the health service and you've got lived experience in something, absolutely use your voice to help drive change," Letisha said. "Help fill any gaps that you may have experienced, and you can shape positive outcomes for our community."
