Evidence summary and stakeholder input
The following is a summary of the findings from the evidence gathering activities and stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page.
Last updated: 31 March 2022
Evidence summary
The benefits of research will take time to be realised. In the meantime, outcomes for people with pancreatic cancer and their families can be improved through the enhanced collection, access, linkage, analysis and reporting of real-world data to understand causes of variation, and drive service delivery and care.
Future inclusion or linkage of data on modifiable risk factors and family history could assist to inform, drive and benchmark a range of prevention and early detection activities.
Health services research relevant to the Australian healthcare setting must be underpinned by access to robust data. Improving the collection and linkage of clinical data to biospecimen and administrative datasets, such as hospital admissions, Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS), will facilitate research and care. Barriers and enablers to collection and linkage need to be addressed, and periodic and contemporary linkage is required to maximise data use and relevance.
In addition to the routine collection of clinical and administrative data, standardising reporting within clinical trials to support meta-analysis and attainment of higher levels of evidence to drive models of care and treatment provision is indicated.
Developing and implementing appropriate indicators to measure care across the pancreatic cancer optimal care pathway (OCP) will drive national benchmarking to optimise care.
There are also opportunities to improve patient experience and pancreatic cancer outcomes by embedding routine patient reported outcome measures (PROMs) and patient reported experience measures (PREMs) into clinical practice as part of local quality improvement processes. However, consumer input is required to better understand how to meaningfully embed experience measures into the healthcare system.
Stakeholder input
Pancreatic stakeholders supported the need for a comprehensive approach to the collection of real-world clinical and patient-reported outcome data to identify unwarranted variations in optimal care for pancreatic cancer. As such, the need for clear service level indicators to assess the provision of optimal care and access to clinical data that allows measurement of patterns and timeliness of care with respect to the OCPs was supported.
Embedding core elements of quality care into health service key performance indicators and funding agreements, the role of credentialling and accreditation to strengthen alignment with optimal care and importance of health services and clinician access to data for benchmarking were highlighted.
Stakeholders supported the longitudinal collection, storage and use of pancreatic cancer biospecimens to understand drivers of treatment response and resistance over time, and a national data strategy, linking key datasets including MBS, PBS, hospital separations data, cancer registry, staging and biospecimens to enable long-term tracking of patient outcomes was also supported.
Better recording of stage at diagnosis and the benefits of building consistency around data definitions were specifically noted. Stakeholders also raised the importance of Aboriginal and Torres Strait Islander status to be recorded for all newly diagnosed patients with pancreatic cancer and the need for the inclusion of appropriate measures of CALD in data sets.
Key priority areas, strategies and activities
Each key priority area has supporting strategies and associated activities for implementation in the short, medium or long term that have been identified to achieve the priority.
