What is the Australian Real World Cancer Evidence Network?
Every five minutes, an Australian is diagnosed with cancer.
While advancements in detection, diagnosis and care are helping more Aussies survive cancer, all treatments have side effects.
Side effects–including pain, fatigue, bladder & bowel function and anxiety & depression–impact a patient’s quality of life and can outlast the cancer itself.
That’s where patient reported measures come in.
What are patient reported measures?
Patient reported measures (PRMs) are questionnaires which ask a patient how they are doing during their cancer journey. PRMs can ask questions specific to the cancer type–like asking prostate cancer patients about erectile dysfunction and incontinence which are common for that cancer type–or they can be general.
There are two types of PRMs:
- Patient reported outcome measures (PROMs) which focus on side effect management and outcomes. This can include questions about pain, fatigue, nausea and mental health.
- Patient reported experience measures (PREMs) which focus on a patient’s overall experience of their healthcare. This can include things like communication with health care providers and satisfaction with the level of care a patient has received.
Collecting PRMs is a win-win-win. Patients are more engaged in their care. Doctors know what matters most to their patient so they can personalise their treatment accordingly. Plus, when collected at scale, PRMs provide a crucial source of data for researchers and healthcare systems. These big data sets highlight gaps & inequities at a national level which can help inform policies and decision-making around cancer care.
The Australian Real World Cancer Evidence Network
In Australia, there are variations in how PRMs are collected, and which questions make the cut. Various factors can impact the selection of PRMs, such as the cancer type or healthcare setting – from local clinics to comprehensive cancer centres, and from cancer registries to clinical trials.
The Australian Real World Cancer Evidence Network is looking to uplift the collection and use of PRMs to improve cancer care across multiple cancer types.
It’s a joint project by Movember and the Australian Government (through Cancer Australia), with support from a consortium of over 100 experts, clinicians and other health sector staff.
What exactly does it involve?
The Australian Real World Cancer Evidence Network will engage patients and experts across the sector to:
- Determine which generic PRMs should be asked across all cancer types
- Build an electronic PRM collection platform to enable fast, cost-effective collection of PRMs
- Develop national benchmarking and reporting so clinicians, researchers and decision-makers can see the bigger picture of cancer care in Australia
- Run a pilot to look at making benchmarked data available to the public
- Create educational materials to lift awareness, understanding & engagement in PRMs
- Find solutions to automate data collection for clinical quality registries
- Seek sustainable funding for clinical quality registries beyond the duration of this project
Why is Movember leading this project?
Movember has a strong track record in the cancer space, having invested $640 million into 850 projects across prostate cancer and testicular cancer since 2003.
Mo-funded prostate cancer registries hold data from 240,000 men across 25 countries including 170,000 PRMs. This includes Australia’s largest cancer registry, Prostate Cancer Outcomes Registry – Australia New Zealand (PCOR-ANZ).
However, to effect change in a national system, we know that we need to look beyond individual cancer types and work together as a cancer sector.
We’re thrilled to be partnering with the Australian Government and working alongside a sector-wide consortium to drive positive changes in Australian cancer care.
Want to know more?
If you have questions or want to get involved in the Australian Real World Cancer Evidence Network, reach out to us at pancancer@movember.com.
We’re particularly interested to hear from cancer patients and people who work in cancer care. Your input will help us shape the Australian Real World Cancer Evidence Network.