A national patient and public colorectal research agenda: Integration of consumer perspectives in bowel disease through early consultation

Introduction
There is a recognised need to include patients and the public in prioritising health research. This study aimed to 1) explore patients’ views on colorectal research and 2) prioritise research topics with patients and the public.
Methods
In phase 1, 12 charitable organisations and patient groups with an interest in bowel disease were invited to attend a consultation exercise. Participants were briefed on 25 colorectal research topics prioritised by members of the Association of Coloproctology of Great Britain and Ireland. Focus groups were conducted and discussions recorded with field notes. Analysis was conducted using principles of thematic analysis. In phase 2, a free public consultation was undertaken. Participants were recruited from newspaper advertisements, were briefed on the same research topics, and asked to rate the importance of each on a 5-point Likert scale. Descriptive statistics were used to rank the topics. Univariable linear regression compared recorded demographic details with mean topic scores.
Results
Focus groups were attended by 12 patients who highlighted the importance of patient centred information for trial recruitment and when selecting outcome measures. Some 360 people attended the public consultation, of which 299(83%) were recruited. Participants rated “What is the best way to treat early cancers in the back passage?” highest, with 227(85%) scoring it 4 or 5. There was no correlation between participant demographics and mean topic scores.
Conclusions
This study prioritised a colorectal research agenda with patients and the public. Further research is required to translate this agenda into real improvements in patient care.