Background
We ran a pilot for a study comparing outcomes in treatments for nailbed injuries in children. The pilot highlighted a few issues we needed to address – mainly completion of the follow up assessments, patient retention and outcomes.
What we did
We ran a focus group with six parents (and one toddler) to address some of the issues. We also presented the study to the Young Peoples Executive Group (YiPpEe) based at the John Radcliffe Hospital, Oxford and we asked for their suggestions to address patient recruitment and information.
What difference did it make?
Feedback from both groups was extremely positive about clinical research in general, and also it greatly influenced the final design of the trial. The groups had definite ideas about how the study assessments should be conducted, what outcome should be assessed, and also how the follow up data could be collected.
Their ideas and suggestions not only addressed the issues raised in the pilot study, but also highlighted an outcome we hadn’t considered that important previously which was the appearance of the nail. The outcome of the appearance of the nail is now a co-primary outcome.
For any research, involving the public is vital to ensure we haven’t overlooked anything and that their needs are considered in the pragmatics of a project. However, I felt PPI was particularly relevant and effective with the paediatric population that this study involves.
The biggest challenge was the recruitment of people for the focus group. In the end we pulled together a group of parents known to one of the researchers from the school gates! This proved effective; however, a more formalised way to recruit or identify groups could be less stressful for all involved!