More Australians are surviving cancer thanks to advances in early detection, diagnosis, and treatment. But for many, the journey doesn’t end when treatment does. The lasting physical, emotional and social impacts can significantly affect wellbeing, yet these experiences aren’t always captured or addressed in the health system.

Dr Imogen Ramsey, Research Fellow at Flinders University’s Caring Futures Institute and recipient of a prestigious Beat Cancer Fellowship from Cancer Council SA, is working to change that.

Her research focuses on understanding the longer-term impacts of cancer and improving how these experiences are reflected in care and policy. With support from her Fellowship, she is now leading a new project that forms part of a major national initiative: the Australian Real World Cancer Evidence Network, co-funded by Movember and Cancer Australia.

“We need better ways to understand what people go through after cancer treatment -because without that data, their needs can go unmet,” says Dr Ramsey.

Her study will lead the first phase of the national initiative by identifying a core set of outcomes that should be routinely measured across all cancer types using patient-reported outcome and experience measures (PROMs and PREMs).

These measures capture direct feedback from people who have experienced cancer, including their physical symptoms, mental health, quality of life, and interactions with the healthcare system. This information can guide clinicians, support services, and policymakers to improve care in ways that matter most to those affected.

Currently, these measures are not collected consistently across Australia, limiting their usefulness. Dr Ramsey’s project aims to address this gap by building consensus on what should be measured and how.

“The first step in this process is to agree on what outcomes are most important,” she says.

“That means working closely with people who have experienced cancer, as well as clinicians, researchers, advocates, and government representatives, to make sure the measures reflect what really matters.”

Her study will use a Delphi method – a structured, multi-round consultation process involving key stakeholders from across the health sector – to develop this national core outcome set.

While Dr Ramsey’s project is just one part of the broader $21 million Real World Cancer Evidence Network, it plays a vital role in laying the groundwork for long-term change.

“This is about making sure every voice counts, and that cancer care in Australia is informed by the real experiences of the people it’s meant to serve.”

Her work also aligns with the goals of the Australian Cancer Plan, which calls for more consistent use of patient-reported data to improve equity, access, and quality of care nationwide.

Recruitment for the first phase of the Delphi study is now underway, with national recommendations expected by late 2025.