Understanding how consumers would like to engage in the research decision-making process

There is an increasing emphasis on community and consumer engagement in cancer research, from identifying priorities to reviewing grants from a consumer perspective. It is clear that there is great interest from the community and consumers to be more actively involved in research, and many organisations and research institutions have responded by convening consumer advisory panels, including consumers on boards and committees, and including consumers and the community in forums and research seminars. While the opportunities available for consumers to participate in research are welcome, current mechanisms to engage with consumers often appear to be tokenistic and bureaucratic. Bedside to Bench, a research, community engagement and health education organisation, conducted an online, consumer engagement in research survey over four weeks. The aim of the survey was to determine when and how cancer patients and their families how they would like to be involved in research. The survey was developed following feedback from consumers at the Australian Pancreatic Genome Initiative's annual research symposium, that suggested current opportunities for consumers to engage in research were limited. Eighty two cancer patients and carers responded to the survey. The majority of respondents (82%) stated that they were interested in being involved in the decision-making process in relation to cancer research. The greatest area of interest was in having access to the results of research projects (23%) and providing feedback to researchers once the projects are developed (23%). Other areas of interest were the development of research projects with researchers (17%), identification of research priorities (17%), with the lowest area of interest being grant reviews (13%).The results of this study suggest that the majority of consumers want to be involved in research in some way, however, given the option, there is potentially only a subset of consumers interested in the review of research grants. What is clear is that, whatever the mechanisms for consumer engagement, strategies, policies and resources need to be available in order to support all stakeholders improve the practice of research involving consumers. The results of this study will be useful to guide future research and policy decisions in relation to consumer engagement in research.