Victorian patient-led research features at international cancer care conference

The Victorian Comprehensive Cancer Centre (VCCC) Alliance has achieved a remarkable milestone, with two patient-led research abstracts accepted for oral presentation at the 2026 MASCC/ISOO* Annual Meeting in Melbourne in June. 

This recognition reflects the VCCC Alliance's innovative approach to harnessing the expertise of cancer patients through effective engagement.

The MASCC/ISOO meeting, a multinational and interdisciplinary conference, brings together professionals and trainees from diverse fields to collaborate and share knowledge.  

It provides an ideal platform for showcasing patient-centred research. By presenting at this respected venue, the VCCC Alliance highlights the value of integrating patient voices into cancer research, care and education. 

Understanding the VCCC Alliance's approach

Both abstracts explore how people living with cancer can lead and shape research. They also rely on the same approach – the VCCC Alliance's consumer-led research framework.

This framework is important because it uses patient experiences to determine priority areas for research. Patients also work with the research team throughout the entire research cycle. This includes developing the methodology, conducting the research study, and the analysis and dissemination of findings.

What makes patient-led research effective?

The first abstract, A Framework to Enhance Patient Perspectives in Research Prioritisation and Design, presents findings from the evaluation of two patient-led pilot studies of cancer care programs.¹  

Evaluation of the programs through the Alliance’s consumer-led research framework identified five core components for success:

• Organisations must be ready to commit time and resources to patient-led input;
• Training and education should meet the needs of all people involved;
• A clear understanding of everyone's roles and responsibilities; and
• A respectful, supportive team environment. 
• ritically, the key finding was that when researchers and cancer patients learn from each other, the research becomes more relevant. Meanwhile, using a framework helps ensure a positive outcome for all involved. 

Dr Julia Paxin, co-author and researcher at the University of Melbourne's Collaborative Practice Centre, emphasises the value of working alongside people with direct cancer experience.  

"Working collaboratively with lived experience has challenged my own assumptions and expanded understanding of ways of working that is meaningful and transformative."

The paradox of visibility without influence

The second abstract, Leadership by People with Lived Experience in Health: What We Know and What's Missing, takes a broader view through a comprehensive scoping review of 180 peer-reviewed and grey literature sources. 
While the review identified increasing formalisation of leadership roles held by people with cancer – including designated positions and remuneration – it also reveals a striking paradox: while people with lived experience become more visible and hold official positions, they often struggle to influence major decisions. This is because power imbalances and cultural attitudes form a barrier. The research describes this as the "glass box effect" – ie. people are highly visible but still constrained in what they can actually change.

Lived-experience leader Peter Gourley, a co-author of the abstract, said the scoping review was a reminder that lived experience leadership “should be judged not by how visible consumers are but whether their involvement actually makes a difference to change things.” 

The scoping review was part of a patient-led research partnership with the VCCC Alliance, MPCCC, the Regional Trials Network, Cancer Council Victoria and the University of Melbourne.

A global platform for patient-centred care

This year’s theme at the MASCC/ISOO meeting – Coordinated and Individualised Supportive Cancer Care – directly aligns with the VCCC Alliance's commitment to advancing evidence-based, patient-centred approaches. The conference will address critical gaps in access to supportive care, explore lifestyle and behavioural support, and optimise management of emerging therapies.

Contributing to global conversation

The acceptance of the VCCC Alliance abstracts, also represents more than academic recognition. It signals growing international momentum towards genuine partnership with people living with cancer.

The VCCC Alliance's work demonstrates the value of patient led research and is a boost for advancing innovation in patient-centred cancer care. 

* Multinational Association of Supportive Care in Cancer (MASCC) and the International Society of Oral Oncology (ISOO) 

¹ The pilot studies were conducted as part of the VCCC Alliance’s Strategic Program Plan (2021-2024) Personalised Cancer Care, and Value-Based Cancer Care programs.  

Experiences accessing and receiving tumour genetic profiling in Victoria: a consumer-led cross-sectional survey study. BMC Cancer (2026) https://doi.org/10.1186/s12885-026-16052-9

Information in the Hand. That's the Best Way": Linking Arabic Speaking Patients With Available Resources to Support Their Cancer Care Journey. Asia Pac J Clin Oncol (2025) https://doi.org/10.1111/ajco.14142