Consumer representatives are people with lived experience of pancreatic cancer who engage with our services, such as patients, family members, and carers. Our Community Advisory Panel (CAP) brings together a diverse group of consumer representatives, who play a vital role in shaping the Centre’s priorities and decision-making. Their contributions ensure our services remain relevant, inclusive, and patient-centred.

“It is important that any part of the healthcare system be reminded and reflective of the needs of the consumer” - Kelly

We invited the Jreissati Pancreatic Centre CAP members to share their journeys and reflect on the impact of their involvement.

Whether they have experienced pancreatic cancer themselves, or cared for a loved one, our panel members represent the voices of the Centre’s broader community.

John recounts the challenge of waiting almost a year for his wife, Jane, to receive a definitive diagnosis of pancreatic cancer. Anna shares her perspective navigating access to treatment for her husband, Rob, whilst living in regional Victoria. These unique lived experiences help guide the work of the Jreissati Pancreatic Centre to ensure our services align with the needs of patients and families.

“Consumer involvement helps mould how the Centre can respond to patient needs”. - Michelle

A Shared Commitment for Progress

Each of our members have unique motivations for joining the panel, but all are underpinned by a desire to improve pancreatic cancer outcomes. Following her diagnosis and treatment for pancreatic cancer, Michelle joined the CAP to give back and share her story. Kelly’s motivation to join was shaped by the harsh disparity between her own encouraging breast cancer prognosis and the sudden loss of her sister, Kathy, to pancreatic cancer.

"I experienced first-hand the inequity of the cancers. Because of years of funding and research, I was given an over 90% chance of successfully beating breast cancer, whereas my sister and others with pancreatic cancer have little to no hope. I knew then that my focus and time had to be given to pancreatic cancer. I wanted to be part of learning and change in this space." – Kelly

Several CAP members did not have access to the Centre during their loved ones' treatment, allowing them to provide valuable insight into the resources they wish had been available to them.

“The whole journey was challenging from beginning to end, as it was all alien territory for both of us... Support really only eventuated once palliative care became involved” - John

From Experience to Impact

Through regular meetings, a collaborative space is created which drives the development of new resources, informs educational initiatives, and provides important consumer perspective on the Centre’s research portfolio.

“As part of my response to the experience was the desire not only to contribute to the care and support of families impacted by PC, but also to support ongoing research into the early detection and treatment of PC” – Anna

The CAP identifies gaps in the Centre’s work that may not be noticeable through a purely clinical lens, helping us prioritise initiatives that will have the greatest impact for future patients and families.

“The involvement of consumers provides a different, non-technical perspective which I believe helps ground technical members of the team.” – John

Panel members are also actively involved in the Centre’s educational events and awareness campaigns.

“It’s important to get out amongst the clinicians, donors, patients, families and become a known entity in the big picture of healthcare, and be the voice of those we have lost to the disease.” - Kelly

Striving to Do More

Through their ongoing involvement, CAP members hope to achieve progress in the fight against pancreatic cancer, and encourage others affected by the disease to share their own experiences.

“If PC has impacted yourself or a loved one, there’s 100% something in your story worth sharing that may help someone else in the future”. - Michelle

While they are proud of what has been achieved so far, many expressed a desire to expand the CAP’s contribution.

“The opportunities to help others and being involved in a more hands on way still feels like an area we could do more in”. – Kelly

As the Jreissati Pancreatic Centre continues to grow and evolve, the voices of our Community Advisory Panel remain central to shaping the future of pancreatic cancer care.

Interested in sharing your voice? Learn more about the CAP and how to get involved.