Introduction: Health and medical funding agencies around the world advocate for consumer involvement in research and emphasise the importance of consumer engagement. In the Australian cancer domain, Cancer Australia worked with Cancer Voices Australia to develop the National Framework for Consumer Involvement in Cancer Control to enhance meaningful consumer participation. Despite the many benefits of this involvement there are also challenges and barriers. This study aimed to explore the lived experiences and perspectives of people who participate as consumers in cancer research.
Methods: A descriptive qualitative research design, underpinned by a social constructionist epistemology, was adopted. Two focus groups were conducted with 5 participants recruited through convenience and snowball sampling. Discussions were prompted by open-ended questions to gain a shared understanding and in-depth insights from participants regarding their needs, motivations, benefits, challenges, roles and contribution; and they were asked to suggest improvements for involving consumers meaningfully in cancer research
Results: Reflexive thematic analysis resulted in four themes: 1) pathways and motivations to consumer involvement; 2) consumers as active consumers; 3) tensions and positives within consumer involvement; and 4) needs of consumers for meaningful involvement in cancer research. Findings suggest meaningful involvement is not a fixed position but a partnership that evolves through the recruitment pathway, team relationships, and institutional supports. Consumers encountered tensions between the desire for genuine contribution and tokenism, and highlighted the need for ongoing communication, the use of plain language, payment and recognition, and preparation by both sides of the partnership. These themes provide insight into the gap between theoretical concepts of consumer involvement and experiences of consumers’ participation in cancer research.
Conclusion: Meaningful consumer involvement in cancer research requires ongoing structural commitment to training, equal power sharing, and relationships that enable consumers to be true partners rather than being an aside in the cancer research process.