Abstract
BackgroundThere 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.MethodsThis 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.ResultsNeeds 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.ConclusionThe 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.
Highlights
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
Needs across the domains ranged from a better understanding of unhealthy behaviours such as smoking and sun exposure, to researching factors related to differences in cancer outcome due to personal and geographical inequity, and better understanding the cancer control needs of vulnerable groups such as older people, culturally and linguistically diverse and indigenous people
‘How can the normalisation process be supported?’. This exploratory project facilitated identification of cancer consumers' priority research needs over five topic areas reflecting major cancer control domains
Summary
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. Greater requirements for need-driven versus science-driven research substantiate the value of studies where consumers have helped to identify relevant research questions [6,7,8,9,10,11,12,13] and prioritise topics for the research agenda [8,10,12,14]. Consumer groups such as Cancer Voices NSW (CVN), publish their members'
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