Roadmap development approach
The Roadmap identifies key priority areas (KPAs) for collective action over the next five years to 2027, across the continuum of pancreatic cancer care and pancreatic cancer research, to improve outcomes and survival for people affected by pancreatic cancer. The Roadmap structure follows the steps in the pancreatic cancer Optimal Care Pathway (OCP). For more information on the Optimal Care Pathway for pancreatic cancer see here.
Development of the Roadmap adopted an evidence-based, consultative and consensus approach, with a comprehensive review of the evidence and multifaceted stakeholder engagement at its core. Consumer consultation has been undertaken with, and built on the efforts and expertise of, the non-government sector.
Key activities undertaken to inform development of the Roadmap have included:
A review of the national and international literature to identify gaps and opportunities in pancreatic cancer, treatment and care;
A review of pancreatic cancer research funding in Australia;
A review of pancreatic cancer clinical trials in Australia;
The mapping of pancreatic treatment and care against the pancreatic cancer OCP;
A MADIP data analysis of socio-demographic characteristics of people with pancreatic cancer;
Public consultation through the Department of Health’s Consultation Hub;
Targeted stakeholder consultations;
Consultations with health professionals who care for people with pancreatic cancer from CALD backgrounds;
An examination of the experiences of Aboriginal and Torres Strait Islander people affected by pancreatic cancer; and
Consultation with Cancer Australia’s Advisory Groups and the National Pancreatic Cancer Roadmap Steering Group;
The outputs of these evidence gathering and stakeholder engagement activities were reviewed to identify key opportunities to improve pancreatic cancer outcomes. Over 680 evidence statements were extracted spanning the 10 evidence and consultation activities. A thematic analysis was then undertaken to identify the KPAs and associated strategies.
Key stakeholders including people affected by pancreatic cancer, members of pancreatic cancer organisations, other cancer organisations and peak bodies, representatives from research institutes and researchers, clinical colleges, health professionals, non-government organisations and government entities, were invited to participate in a two-stage modified consensus Delphi priority-setting process.
One hundred and thirty-nine multi-disciplinary stakeholders from around Australia contributed to Round 1 of the Delphi process. A quantitative survey approach prioritised the KPAs identified from the evidence and stakeholder activities.
A representative subset of 70 stakeholders from Round 1 was then invited to a stakeholder workshop – Round 2 of the Delphi process - to further refine the KPAs and discuss associated strategies. The final KPAs and strategies were reviewed by the National Pancreatic Cancer Roadmap Steering Group prior to incorporation into the Roadmap.
The identification of KPAs for inclusion in the Roadmap was evidence-informed, consensus-based and underpinned by the Roadmap Principles.
Principles for identifying key priority areas for action
Informed by and for people affected by pancreatic cancer. Respectful of, and responsive to, the preferences, needs and values of the individual, family and carer. Considerate of culture, age, co-morbidities, stage at diagnosis, location and socioeconomic circumstance.
Focus on priority populations
Focus on the needs of priority populations including: Aboriginal and Torres Strait Islander people, people from culturally and linguistically diverse backgrounds, and people living in regional and remote and lower socioeconomic areas.
All people affected by pancreatic cancer should have access to quality pancreatic cancer care irrespective of demographic, geographical, socioeconomic, cultural and other factors.
Collaborative and deep engagement with people affected by pancreatic cancer, health professionals, clinical colleges, researchers and research institutes, pancreatic cancer organisations, peak bodies, health services, government and non-government organisations, to improve pancreatic cancer outcomes.
Innovative and responsive
Fast track innovation and be responsive to existing evidence-based pancreatic cancer treatment and care, clinical trials and research.
Key priority areas for action will be based on the best evidence, assessed on scientific rigour, and informed by the best available national and international guidance in pancreatic cancer treatment, care and research.
Optimal pancreatic cancer treatment and care
Provide holistic, best practice treatment and care throughout the care continuum, aligned with the Optimal care pathway for people with pancreatic cancer and with reference to the Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer.
The development of the Roadmap was overseen by a National Pancreatic Cancer Steering Group. The multidisciplinary membership of the Steering Group included representation from people affected by pancreatic cancer, consumers, clinical experts, researchers, representatives from Aboriginal and Torres Strait Islander peak bodies and the non-government and government sector. The Steering Group first met in October 2020 and members participated in four meetings during the 21-month Roadmap development period. The Steering Group provided high level strategic and expert advice to Cancer Australia to guide the development of the Roadmap. The outcome of all the evidence gathering activities, public consultation hub findings, and targeted consultations with Aboriginal and Torres Strait Islander stakeholders and health professionals, including those that provided care to CALD population groups, was presented to the Steering Group.
National Pancreatic Cancer Steering Group
Dr Lorraine Chantrill
Chair, Head of Department Medical Oncology, Illawarra Cancer Care Centre, NSW
Chair, Australasian Gastro-Intestinal Trials Group, NSW
Professor Meera Agar
Chair, Palliative Care Australia, Palliative Medicine Specialist, Liverpool Hospital, NSW
IMPACCT Director at University of Technology Sydney
Professor Chris Baggoley AO
Consumer, SA Board Member, PanKind, The Australian Pancreatic Cancer Foundation,
Dr Dawn Casey
Deputy Chief Executive Officer, National Aboriginal Community Controlled Health Organisation
Mr Daniel Goulburn OAM
Chair, Australian Pancreatic Cancer Alliance, Co-founder, Purple Our World
Ms Claire Howlett
Assistant Secretary, Cancer Policy and Services, Department of Health
Mr Gino lori
Consumer representative, Cancer Voices Australia, NSW
Professor James Kench
Head of Tissue Pathology and Diagnostic Oncology, Royal Prince Alfred Hospital, NSW
Professor Mei Krishnasamy
Chair Cancer Nursing, University of Melbourne, Professor/Director, Academic Nursing Unit, Peter MacCallum Cancer Centre, VIC
Dr Dominique Lee
Radiation Oncology Consultant, Prince Alexandra Hospital, QLD, Royal Australian and New Zealand College of Radiologists representative
Ms Bryce McCarthy
Upper Gastrointestinal Clinical Nurse Specialist, WA Cancer and Palliative Care Network, WA
Professor Geoff Mitchell
Emeritus Professor, General Practice and Palliative Care, University of Queensland, QLD, Royal Australian College of General Practitioners representative
A/Professor Mehrdad Nikfarjam
Liver, Pancreas and Biliary Surgeon, Senior Lecturer, Department of Surgery, University of Melbourne, Austin Health, VIC
A/Professor Phoebe Phillips
Head Pancreatic Translational Research Group, Adult Cancer Program, Lowy Cancer Research Centre, NSW
Ms Perry Sperling PSM
Consumer, VIC, Former member of Cancer Australia’s Advisory Council
Ms Michelle Stewart
Chief Executive Officer, PanKind, The Australian Pancreatic Cancer Foundation