Embedding Consumer-Led Research in a Comprehensive Cancer Centre Alliance: A Mixed-Methods Evaluation

As consumer involvement becomes increasingly recognised as an important part of health and medical research, new ways to involve consumers are actively being explored. This evaluation aimed to investigate the experience of consumers and other stakeholders involved in two pilot consumer-led research projects within a comprehensive cancer alliance.

The evaluation consisted of program document review, an online survey and individual interviews to explore the experience of a range of stakeholders. Analysis was via a convergent mixed methods approach.

Overall, 12 consumer participants and 11 other non-consumer stakeholder participants took part in the evaluation. An in-depth narrative of participants' experiences was developed, from which five key components of effective consumer-led research were identified: (1) Organisational commitment to consumer involvement at all levels, (2) appropriate time and resources, (3) training and education, (4) clearly defined roles and responsibilities, and (5) an ecosystem that values individuals and creates a cohesive group dynamic. While the two pilot projects shared similarities, their iterative and sequential nature enabled learnings from the first to be applied in real time to the second. Overall, the experience of the programs was positive, with both consumers and other stakeholders rating the pilots as successful and stating they were highly likely to recommend the program to others.

This evaluation illustrated that the implementation of a framework for consumer-led research pilot projects was perceived positively and enhanced consumer leadership in the research process. Additionally, it identified areas where power and decision-making could be more evenly shared, thereby enhancing consumer leadership in the research process.

People with lived experience of cancer (including service users and caregivers) were involved in this evaluation in two ways. First, two consumers were part of the Victorian Comprehensive Cancer Centre Alliance evaluation team (L.L. and N.D.) and helped design the evaluation plan and data collection tools and reviewed findings and draft reports. N.D. contributed to the manuscript write-up. Second, consumers who were part of the two pilot projects and had roles in consumer-led research projects (n = 17) were invited to participate in the evaluation activities (online survey and/or interview) to share their experience. These consumers were also invited to an online feedback session with the evaluation team to sense-check and confirm the evaluation findings prior to finalisation.