Consumers

Patient voice. Patient powered.

The VCCC Alliance has a strong and demonstrable commitment to ensuring the patient voice is heard at all levels of the organisation. The consumer perspective is incorporated into decisions that shape the alliance and inform our approach to advancing cancer research, education, and clinical care.

Programs and activities are underpinned by an embedded consumer engagement strategy that keeps patient-centred care as a core value. Critical to ensuring this goal is tackling areas of work that best align with patients’ needs and priorities.

Advancing consumer-led research in cancer

Bringing about real change for those experiencing cancer needs to be led by those with lived experience. Consumer-led research pilot projects were established in two VCCC Alliance programs in 2022-23:

1. Personalised Cancer Care
2. Value-Based Cancer Care

A framework was developed for these projects incorporating input from multiple stakeholders – fast becoming a gold-standard approach to consumer involvement in health and medical research.

Consumer-led research is driven by consumers and executed through academic collaboration. This ensures robust evidence is generated.

To enable this, consumers are taught about research processes. They are supported to hold the balance of the decision-making, to prioritise a research direction that directly aligns with consumers’ needs and values.

Consumers discuss ideas at one of our events.

"Consumer-Led Research Group members participate in every part of the research project, from formulating the research question, to analysis and interpretation of the data. This creates many opportunities to consider the social and emotional aspects of a patient's care and what patients really value."

- Sufi Salieh, member, Value-Based Cancer Care Consumer-Led Research Group

Highlights

Underpinned by a firm belief that consumer involvement enhances cancer research and education, the VCCC Alliance has significantly grown consumer engagement, with a 17 per cent increase in activities in 2022-23.

There were 820 activities involving 54 consumers, with an increased breadth including speaking roles, focus groups, consumer panels, and consumer-led research projects.

Other work demonstrating the Alliance’s leadership in consumer engagement included:

• The fourth annual VCCC Alliance Consumer Engagement Forum, with 13 per cent of attendees from regional Victoria.
• Cancer Consumer Advisory Committee (CCAC) connected with the Western Alliance to strengthen working relationships between regional, rural, and metropolitan consumers.
• Submission to the National Health and Medical Research Council (NHMRC) Consumer and Community Involvement in Health and Medical Research Statement (2016) Review.