- School/Institute/Department: The National Centre for Bowel Research and Surgical Innovation, Blizard Institute, School of Medicine and Dentistry
- Subjects: Patient Involvement, Bowel Cancer, Outreach
- Audience: Patients, Charities, Young People
The National Centre for Bowel Research and Surgical Innovation (NCBRSI) has developed, in collaboration with the charity Bowel & Cancer Research, a patient involvement programme which actively involves the public in all aspects of its clinical research activity.
In 2014 PPI members were involved in 11 consultations, from shaping the research question to amending lay summaries and patient information sheets, advertising, bowel diaries and health care utilisation journals. They have participated in trial steering committees and the dissemination of trial results.
PPI members are provided with the tools to enable them to have the confidence to actively contribute to PPI activities through the full cycle of research though events, workshops and training. For example, in the CONFIDeNT trial (CONtrol of Faecal Incontinence using Distal NeuromodulaTion) a special PPI event was held to share the trial results, meet scientific colleagues, and participate in workshops resulting in direct outputs for lay dissemination of the CONFIDeNT results; including patient letters, clinic posters and webpage.
Most recently members of the PPI group have also participated in testing a video game, Gut Feeling, developed in association with the Centre of the Cell to educate children about healthy bowels, currently still under development.
We are working together to develop a model of involvement which is sustainable over the long term, including multiple trials and phases of involvement.
Charles Knowles,Professor of Surgical Research
The collaboration with the charity Bowel & Cancer Research (BCR) has enabled a greater breadth and reach of work than if the programme had been maintained within the confines of the clinical departments of the researchers. BCR delivers additional resources to the programme and enables the research team to benefit from the charity’s role as a trusted intermediary. Bowel & Cancer Research also brings expertise in marketing communications which has helped with promoting the PPI programme to the public and the benefits of involvement.
The involvement of the PPI has benefitted researchers by making them more aware of the barriers that patients face in terms trial feasibility and also the knowledge or language gaps and general misconceptions or fears that exist about clinical trials. Working with PPI members throughout the research cycle has helped researchers to see a different perspective, understand how PPI can help them improve their research and realise the true value and impact that PPI can have in designing, delivering, managing and disseminating research.
This PPI programme is ongoing and now also covers technology developments with Enteric NIHR Health Technology Cooperative.