A promising research initiative, leveraging input from cancer survivors and their caregivers – is set to further improve the way pancreatic and biliary cancer patients, along with their caregivers, access tailored information and supportive care. 

This initiative is led by Dr Katia Ferrar – working with A/Prof. S. George Barreto and the HPB (Hepato-Pancreato-Biliary) Surgery Unit at Flinders Medical Centre – and is supported by Flinders Foundation.

At the heart of the project is a newly developed tailored resource portal. Designed in collaboration with patients and caregivers, this user-friendly portal brings together resources from Australian cancer organisations and government departments; reducing the stress and time involved in finding information about pancreatobiliary cancers.  

Pancreatobiliary refers to the pancreas or biliary system (bile ducts and gallbladder). 

“People needed help accessing information and services,” Dr Ferrar explains. “Some patients had no trouble, others felt completely lost.” 

A/Prof. Barreto believes such a resource could be among the first of its kind. 

“Structured pathways addressing the holistic care needs of pancreatobiliary cancer patients are uncommon globally” A/Prof. Barreto says. 

What is holistic care? 

This initiative is driven by the concept of holistic care — an approach that supports the whole person, not just their illness. 

“It’s about whatever support or service a person may need at a given time to optimise their wellbeing,” Dr Ferrar says. 

This can include not only excellent medical and surgical care, but also the support of other services such as social work, physiotherapy, psychology, spiritual care, and financial or legal assistance. 

“Survivorship care is about living as well as possible, not just surviving the disease.”  

“While 20% of individuals diagnosed with pancreatobiliary cancers are amenable to surgery and up to 60% receive chemotherapy, 100% of them need holistic care” says A/Prof. Barreto.  

Survivors at the centre of the solution 

Hearing directly from cancer survivors and their caregivers through co-design focus group sessions has been a vital part of the project’s development. 

“Everyone’s experience is different, so too are their information and service needs” explains Dr Ferrar. 

These conversations have helped shape key elements of the portal,including adding content areas not previously considered for inclusion — such as skincare. 

From prototype to practice 

Currently in draft form, the portal is expected to be available in late 2025. Initially, it will be introduced to patients at Flinders Medical Centre. 

Importantly, the portal is just one component of the broader initiative. The team is also developing a supportive care navigation tool to be implemented in the HPB (Hepato-Pancreato-Biliary) surgical unit at Flinders Medical Centre. This tool will help identify patient needs and enable timely referrals to the appropriate services — easing the burden on patients and families. 

“My vision is that people will have access to the right information and services when and where they need them,” Dr Ferrar says.