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 has already commenced, 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.
Starting in early 2025, key stakeholders from the cancer care sector will begin collaborating on the best ways to integrate PRMs into cancer care in Australia. They will be 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 has two core objectives:
If you would like to be included in this consultation, please contact us.
Alongside the sector consultation, there will be 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 will help 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).
If you would like to contribute during this PWLE consultation, please register your interest.
Insights from stakeholder consultations, the PRM scoping exercise, and a comprehensive literature review will directly inform the Delphi method, a structured, consensus-building process.
The Delphi aims to achieve consensus on a core outcome set (COS) for cancer care, including PROs and PREs. It will be a structured, iterative process based on insights from a diverse group of stakeholders, including healthcare practitioners, PWLE, researchers, and policymakers. These consultations will identify critical domains in PROs and PREs, and explore considerations for implementation, such as equity and inclusivity.
This collaborative method ensures that the perspectives of all relevant stakeholders are incorporated in the COS.
After consensus on the COS has been achieved, a set of PRMs to measure this COS will be recommended through further consensus-building activities.
The insights gathered during stakeholder consultations will help with efforts to lay the foundation for national benchmarking.
Once the COS is established, the next step will be to identify measurable indicators aligned with these outcomes. These indicators will enable benchmarking across various cancer types, providing a consistent way to evaluate and compare cancer care quality and patient experiences on a national scale.
The national benchmarking system will be a significant milestone in the Pan Cancer Initiative. It will ensure that the PRMs identified and prioritised through the Delphi process lead to quality, efficiency and experience improvements in cancer care across Australia.
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