Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda

Abstract

The study 'Listening to the Views of People Affected by Cancer About Cancer Research' is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper. The study adopts a 'participatory research' approach entailing the formation of a 'reference group' and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching 'hard to reach' representatives directly through community groups and participating study sites. Experiences from this study illustrate that a 'participatory research' approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research. 'Participatory research' offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.