Long‐term consumer involvement in cancer research: Working towards partnership

BACKGROUND: Meaningful consumer involvement in health research is important. There are limited data on how to maintain long‐term consumer involvement. OBJECTIVE: To identify barriers and facilitators to meaningful long‐term consumer involvement in research. DESIGN: Six semi‐structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia's National Framework for Consumer Involvement in Cancer Control. RESULTS: Equality, respect and feeling valued were facilitators to long‐term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus. CONCLUSION: Research networks should reflect on several factors to maintain long‐term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on‐going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.