The research views and priorities of people affected by cancer: Findings from the Macmillan Listening Study

2006 Conference

This paper responds to the theme of public involvement in research by presenting the Macmillan Listening Study, a national research priority setting exercise involving people affected by cancer. 105 cancer patients participated in 17 consultation groups at ten sites across the UK. In these groups, participants generated and prioritised their own research interests and discussed their experiences, attitudes and perceptions of cancer research. This paper will present the key findings of the study, including the research views and priorities of participants from diverse ethnic minority backgrounds.

The study adopted a participatory research approach and thus involved cancer patients and carers as ‘co-researchers’. The co-researchers collaborated with the Macmillan Research Unit throughout the research process from study design to data collection and analysis. The study findings reveal that current UK cancer research activity does not reflect the experiences and priorities of patients. Furthermore, patients illustrated areas where research practice needs to be improved, such as with the dissemination of research findings to participants. The paper raises many issues, including the need for public consultation in research agenda setting and in improving the conduct of research. The study also raises questions about how the research community can respond to patient derived priorities.