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

Abstract

Aim The study ÔListening to the Views of People Affected by Cancer About Cancer ResearchÕ 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.Design The study adopts a Ôparticipatory researchÕ approach entailing the formation of a Ôreference groupÕ 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 Ôhard to reachÕ representatives directly through community groups and participating study sites.Findings Experiences from this study illustrate that a Ôparticipatory researchÕ 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.Conclusions ÔParticipatory researchÕ offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.

The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study

“…In addition, community representatives from under-researched sections of society were also involved through participating sites and national organisations. Fifteen patients and carers from the reference group became co-researchers and received training and support to collect data and conduct analysis with the Macmillan Research Unit (Wright et al, 2006). The co-researchers 'co-owned' the study with the Unit, and as such had a direct influence on all aspects of the study, including data collection, analysis and dissemination of study findings.…”

“…Group discussions were tape recorded and subsequently transcribed verbatim. Training for the co-researchers was extensive and involved issues such as avoiding leading questions, encouraging discussion from all participants and being reflective of the potential impact of the researcher on the discussion, thus helping to maintain the quality of the data (Wright et al, 2006).…”

“…The participatory approach was successful as a vehicle to engaging cancer patients in discussions about research priorities, and participants valued the data collection being co-led by someone who had experienced cancer themselves. A more detailed description of their involvement in the study has been published elsewhere (Wright et al, 2006). Consultation groups were the main method of data collection, which combined a focus group approach with an adapted Nominal Group Technique.…”

“…Given the interest in patient derived priorities for research, it was considered appropriate to adopt a participatory approach as the theoretical frame of reference for the study (Parkes and Panelli, 2001;Reason and Bradbury, 2001;Wright et al, 2006). Participatory research sees research as a democratic process where participants are active citizens rather than passive 'subjects' (Reason and Bradbury, 2001).…”

Development and evaluation by a cluster randomised trial of a psychosocial intervention in children and teenagers experiencing diabetes: the DEPICTED study

“…This could reflect their inherent interest in the topic under investigation or perhaps the value they placed on being able to influence service improvements, a significant motivating factor for people involved in research. 107,116 It could be argued, therefore, that the lay stakeholders felt empowered through their involvement at this level in the research process. They had views about their experiences of clinic consultations and identified strategies to improve existing services.…”