Comprehensive, high-quality data are the foundation for advancing rare cancer research, prevention, diagnosis, treatment, and care delivery. Accurate data collection and timely reporting are vital for understanding the prevalence, incidence, and outcomes of all cancers, and what is happening at a patient, system, and national level. This enables recognition of patterns and disparities, providing crucial insights to improve treatments, care and outcomes.
The challenge
Historically, rare cancer data availability and quality have been poor. This is in part due to:
- the challenges of accurately coding and reporting rare cancers, with small patient numbers that are geographically dispersed and have diagnostic complexity
- variation in jurisdictional cancer registries
- key indicators, such as stage of diagnosis, only being routinely captured for the five most commonly diagnosed cancers: melanoma, breast, prostate, lung, and colorectal cancers.
These factors result in a significant gap in our knowledge of rare and less common cancers.
Addressing the issue
Key priorities include:
- Establishing a comprehensive cancer data framework for Australia, with a defined minimum data set to include rare and less common cancers.
- Prioritising genomic data collection to enable widespread use of precision medicine, supported by comprehensive genomic profiling.
- Ensuring that the voices and lived experiences of people with rare cancers and their families are at the heart of service design and delivery, such as through the routine collection and use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in rare cancer research and care.
- Benchmarking within systems and nationally, with all states and territories using clinical and patient-reported data to assess and improve their services. Accurate and timely data are critical for driving better clinical outcomes and service improvement.
You can read more about each of these priorities in A Rare Cancer Moonshot: Equity for everyone with cancer.
What RCA is doing about it
Rare Cancers Australia is commissioning a national cancer lived experience survey to better understand the needs of people living with rare and less common cancers, and their carers. The data will identify unmet needs to help Rare Cancers Australia and health commissioners to design and target support services, and to advocate for change.
Learn more about the Cancer Lived Experience Survey.
What we want
Ensure rare and less common cancers are represented within the National Cancer Data Framework.
Cancer Australia and the AIHW should:
- prioritise the rapid development and implementation of an ambitious National Cancer Data Framework and minimum cancer data set, building on the strengths of state registries and enabling a more timely, accurate and person-centred national view of cancer pathways and outcomes for rare and less common cancers
- work with states and territories to ensure all cancer registries are capturing timely, high-quality and consistent data across the cancer pathway, including molecular sub-type and stage at diagnosis and indigenous status, for all cancer subtypes.