Cancer Voices is a leader in consumer involvement in cancer survivorship research in Australia. The Consumer Involvement in Research (CIR) Program links researcher to consumers across the full range of cancer research given that ‘survivorship’ commences once a person receives a diagnosis.
Celebrating its twentieth anniversary in 2025, CIR was the first program of its kind in Australia. Developed with Cancer Council NSW, the service provides online access by researchers for matching with an informed, trained consumer/s as research project members or to represent the consumer voice on cancer-related committees. The Program has been documented during its operation by four peer reviewed publications and a formal evaluation.
Comprising four self-paced modules and a workshop, all online, the training gives participants an understanding of the types and stages of cancer research, research funding cycles and what is expected of both the consumer and researcher in working together.
Studies have shown that the quality of research greatly benefits from consumer engagement – in its direction, its applicability to community needs, and its end value for people affected by cancer. The consumer, as a survivor or carer, is able to consider issues from a broad and objective viewpoint in assessing a research project in its early stages (for example, ‘Is this a valuable research objective for people affected by cancer?’; ‘Could its direction be better focused?’) and throughout its cycle, keeping community needs at the forefront of researchers’ minds.
Funding bodes now expect that applicants collaborate in a meaningful way with engaged consumers, and will continue to do so throughout the life of a project. The specific roles will vary depending on the type of project; increasingly these are focused on the development of ‘patient led’ research, and consumers are being recognised as integral members of cancer survivorship investigation teams.