Aims: The National Pancreatic Cancer Roadmap, developed by Cancer Australia, sets out the need to establish pathways to timely pain management, including interventional pain management and palliative care, with supporting Clinical Guidance at key stages of the pathways. We describe a methodology for pathway development that prioritised community and clinician engagement.
Methods: A longitudinal iterative co-production methodology informed by program logic and deliberative dialogue approaches was chosen to guide participant engagement, assess data from evidence reviews and participant experiences, and develop and achieve consensus on project outputs. Deliberative dialogue fosters dialogue across diverse groups when interpreting scientific and contextual knowledge to inform health policy. Themed working groups (n=4), stakeholder groups (n=4) and an expert advisory group (n=1) were established including clinicians (pain, palliative care, oncology, general practitioners, radiologists and gastroenterologists), patients, carers, community organisations, culturally and linguistically diverse, and Aboriginal and Torres Strait Islander people (n=84 participants). Each group met on four occasions to review evidence, provide feedback, and confirm collated outputs. The expert advisory group provided project oversight and final review of outputs.
Results: In total 37 meetings led to the working group and stakeholder co-production and endorsement of care pathways, clinical guidance, health care education modules and patient information for pancreatic cancer. The longitudinal iterative methodology enabled participants to recognise their suggestions being included as work progressed. Providing pre-reading, updated meeting summaries and specific focused questions led to increased productivity and group engagement. The range of participants’ backgrounds ensured outputs had broad applicability, including for priority populations. Grouping participants with similar experiences allowed greater depth of discussions.
Conclusion: Through an iterative deliberative dialogue consultation process, we successfully coproduced a set of community endorsed care pathways and resources for pancreatic cancer care with national application. This approach to engagement has relevance for other national policy and guideline production.