Patient and public involvement (PPI) has been incorporated into design and conduct throughout the research process, from conceptualisation to dissemination, and the PRECISE study has benefitted from the strong links with PPI groups formed during the BATCH trial. More detail is described in the BATCH report.1
The parent PPI representative on the BATCH trial was a lay co-applicant and member of the BATCH TMG. They also attended the PRECISE Study Development Group meetings to discuss the importance of the study throughout the early stages of planning and coproduced and helped finalise the study design. An additional parent PPI representative was recruited for the PRECISE SMG through adverts with Health and Care Research Wales Public Involvement Opportunity and NIHR People in Research. They had lived experience of having a child in hospital due to infection. Both parent PPI representatives attended the BATCH TMG and PRECISE SMG meetings, reviewed the patient facing materials, and contributed to the discussion of the logistics including the day-to-day running of the trial from a child and family perspective.
Parent PPI representatives were also included on the BATCH TSC and IDMC, supported by the BATCH PPI lead. All parent representatives have contributed throughout the course of the trial and study and will continue to provide input into dissemination activities, for example, including parents and young people to actively contribute to dissemination events, including presenting parents’ and young people’s views and stories.