Patient-reported measures (PRMs) capture the patient’s perspective on health and healthcare experiences. They are usually referred to as patient-reported outcome measures (PROMs) or patient-reported experience measures (PREMs). The value of PRMs is wide-ranging.
At the individual level, PRMs empower patients by allowing them to express their experiences, symptoms, and concerns in their own way. They provide additional communication pathways between patients and healthcare providers, and enhance shared decision-making. Clinical care can be improved by PRMs informing clinicians about specific patient needs that can be otherwise difficult to capture, enabling personalised care plans and timely interventions.
At the organisational level, PRMs can help evaluate and compare patient outcomes to identify areas for improvement. Quality assurance can be enhanced by using PRMs to assess and monitor quality of life, effectiveness of treatments, and patient satisfaction. Insights from PRMs can help prioritise investment in the most impactful areas for patient care.
At the system level, aggregated patient-reported data can support evidence-based policymaking, ensuring resources are allocated to address the most pressing needs of patients. It can also drive equity across the system by highlighting disparities in care, and guiding initiatives to improve access and outcomes for underserved populations.
The path to establishing a nationally agreed-upon set of PRMs has been carefully designed to ensure inclusivity, sector-wide collaboration and patient-centre care.
A comprehensive scoping exercise has identified what PRMs are currently collected across the cancer care sector and how they are being used.
Existing PRMs tend to prioritise clinical outcomes and quality of life measures, such as pain, fatigue, and emotional well-being. While there is no question about the importance of such measures, equally valid are patient experiences related to access and equity. And there are inconsistencies in how these experiences are captured.
There has been significant progress in how PRMs are collected nationally. However, implementation of PRMs into clinical practice has been subject to variation and inconsistency due to different institutions and state agencies employing their own tools. This has created challenges for comparative benchmarking and interoperability with data collection systems and health records. Some states and institutions have taken important steps to integrating PRMs into electronic health records and clinical workflows. But there is a lack of harmonisation across jurisdictions, with some quite advanced in this space and many others still in early stages.
A critical step to overcoming the above challenges is defining a core set of PRMs that are relevant across cancer types and addressing system-wide barriers to implementation, taking into account the nuances of the Australian healthcare system.
Stakeholder engagement was undertaken, with a pre-conference workshop at the Clinical Oncology Society of Australia (COSA) Annual Scientific Meeting in November 2024. The workshop (‘Pan Cancer: Building Sector-Wide Patient-Reported Measure Integration’) brought together a diverse range of stakeholders to identify important outcomes and experiences in cancer care delivery. Stakeholders also explored key considerations for implementing PRMs effectively across the system.
In early 2025, key stakeholders from the cancer care sector began collaborating on the best ways to integrate PRMs into cancer care in Australia. This was instrumental in developing the core set of PRMs mentioned in step 1, paving the way for improved patient care and health outcomes. The stakeholder consultation had two core objectives:
Alongside the sector consultation, there was targeted engagement with people who have a lived experience of cancer (PWLE) to ensure that the voices of patients, partners, caregivers and family members are at the centre of our work. These engagements helped identify the outcomes and experiences that matter most to people impacted by cancer while also exploring the challenges to implementing PRMs. These challenges include optimal timing for collecting PRMs (for example, treatment phase versus survivorship) and the burden of participation (for example, questionnaire length, frequency of follow-up).
nsights from stakeholder consultations, the PRM scoping exercise, and a comprehensive literature review directly informed the Delphi method – a structured, multi-round process involving healthcare professionals, researchers, policymakers and people with lived experience of cancer, ensuring the perspectives of all relevant stakeholders were incorporated in the Core Outcome Set (COS).
Consensus was reached on eight outcome domains, six experience domains, and an open-text box for patients to raise issues most important to them.
This established a nationally agreed Core Outcome Set covering the outcomes and experiences that matter most across cancer types, together with recommended PROMs and PREMs to measure them. A COS Alignment Toolkit will be launched at the Clinical Oncology Society of Australia (COSA) Annual Scientific Meeting in November 2026 to support the adoption of the COS.
Agreeing the Core Outcome Set is only half the challenge, the next is helping services actually use it. Many hospitals and registries already collect patient-reported measures, but often in different ways, so a practical way is needed for them to see how their current measures line up with the Core Outcome Set and where the gaps are.
To do this, Monash University systematically mapped existing PROM and PREM instruments against the Core Outcome Set to identify which measures capture each domain, and what services would need to collect the full set. This mapping and gap analysis, together with that we have heard from clinicians and services about what works in practice, has informed the Practical Recommendations Report.
These insights are now being built by UNSW and Cancer Australia into an online COS Alignment Tool, a resource that will let a service map its current measures against the Core Outcome Set, understand its gaps, and choose suitable instruments to fill them. The tool is being shaped with the sector through interviews and hands-on usability testing to make sure it is genuinely useful and, combined with the Practical Recommendations Report, is on track to launch at the COSA Annual Scientific Meeting in November 2026 as the COS Alignment Toolkit. Once available, it will be hosted by Cancer Australia so it remains a lasting resource for the sector.
With the Core Outcome Set established, the focus now moves to how patient-reported data could be reported and shared nationally. Rather than building a standalone platform, the program is exploring a practical, sustainable approach to national reporting and visualisation — aligned with the Australian Cancer Plan — that works with the sector’s existing systems.
© 2026 Movember. All rights reserved. Movember Foundation is a registered charity in Australia ABN 48894537905
Movember acknowledges the Traditional Custodians of Country throughout Australia and their connection to land, sea and community. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today.