Background and aim: Consumer involvement is recognised as a crucial strategy to improve health services and is advocated by the World Health Organisation and many health systems. There is a significant gap in knowledge about consumer engagement in practice, including consumers’ involvement in the process of improving cancer services. Few studies have explored consumers’ own views about their involvement in cancer care and health service improvement. This study aimed to explore these perspectives.
Methods: Cancer consumer representatives were recruited through Integrated Cancer Services in Victoria, Australia. Eligible consumers were, or had been, a member of a health service improvement-related committee or project and attended at least one meeting with health professionals. Semi-structured qualitative interviews were conducted online and transcribed verbatim. Data were analysed using inductive thematic analysis.
Results: Six experienced participants were interviewed. Perspectives on their involvement in improving cancer services were categorised into three major themes. The first addressed personal aspects of involvement, in which participants described personal motivations (e.g., having lived experience of cancer themselves or in their family), challenges encountered, the need for greater diversity of consumer representation, evolving identity as a consumer representative, and support needed and received at committee and organisational levels. The second discussed practical contributions made by consumer advocates to improve systems and services. Participants detailed their active engagement with committees and consumer-led projects, contributing both their cancer experience and general or professional skills acquired over their lifespan. The third theme outlined potential improvements to support more meaningful and integrated involvement of consumers in the health system. Suggestions highlighted widening consumers’ representation to include often marginalised voices to inform decision-making at both local committee and health system levels.
Conclusions: The study enhanced our real-world understanding of the role that cancer consumers play in improving health services. Health leaders need to keep striving for greater inclusion of health consumers in service planning and implementation.