Fleshing out the data: when epidemiological researchers engage with patients and carers. Learning lessons from a patient involvement activity

Patient and public involvement and engagement has become an essential element of health research, ensuring aims and outputs are worthwhile and relevant. However, research involving secondary data analyses does not present immediately obvious ways to involve patients and the public. Innovative approaches to ensure their involvement is meaningful and effective are required. The Cancer Survival Group cohosted a full-day meeting with the National Cancer Research Institute Consumer Forum—a group of patients and carers. This included the Forum’s ‘Dragons’ Den’: a small-group session in which their members provided insight, advice and ideas on current or planned research in the Cancer Survival Group. We investigated this activity as an example of effective patient involvement, with the aim of developing broad recommendations to improve epidemiological/quantitative research by involving patients and carers as directly as possible. In addition to quantitative data captured through evaluation forms completed after the event, we used semistructured interviews of a sample of participants to evaluate the effectiveness of the session and to learn lessons. The interviews were analysed to identify broad or recurrent themes and recommendations. Feedback was overwhelmingly positive, and some impacts on the research projects were identified. Interviewees commented on overall expectations and experiences, as well as specifics of room layout, timing of the session, composition of groups, effectiveness of the facilitation and content of discussions. We present a summary of our findings as a guide for other researchers, including recommendations for improvement gleaned from the interviews. The value to researchers of hosting and participating in such activities was clear. We developed recommendations that should help to improve future events for ourselves and for others who wish to conduct similar activities, which in turn may lead to more concrete benefits for research and patients.