Towards meeting the research needs of Australian cancer consumers

BACKGROUND: There is a growing amount of literature to support the view that active involvement in research by consumers, especially informed and networked consumers, benefits the quality and direction of research itself, the research process and, most importantly, people affected by cancer. Our exploratory project focuses on identifying their priorities and developing a process to assess the research needs of Australian cancer consumers which may be useful beyond the cancer scenario. METHODS: This project was consumer initiated, developed and implemented, with the assistance of a leading Australian cancer consumer advocacy group, Cancer Voices NSW (CVN). Such direct involvement is unusual and ensures that the priorities identified, and the process itself, are not influenced by other interests, regardless how well-intentioned they may be. The processes established, and data collection via a workshop, followed by a questionnaire to confirm and prioritise findings, and comparison with a similar UK exercise, are detailed in this paper. RESULTS: Needs across five topic areas reflecting cancer control domains (prevention and risk; screening and diagnosis; treatment; survivorship; and end of life) were identified. Cancer consumers high priority research needs were found to be: earlier diagnosis of metastatic cancers; the extent of use of best practice palliative care guidelines; identifying barriers to cancer risk behaviour change; and environmental, nutrition and lifestyle risk factors for people with cancer. A process for identifying consumers’ research priorities was developed and applied; this may be useful for further investigation in this under-studied area. CONCLUSION: The findings provide a model for developing a consumer derived research agenda in Australia which can be used to inform the strategic direction of cancer research. Consumers have been seeking a workable method to achieve this and have worked in collaboration with a major cancer charity, which funds research, to do so.