The event was held at the University of Southampton and was attended by a variety of people from across the country who have an interest in engaging young people in research. Many people had little or no experience in doing any patient and public involvement (PPI), but the content was suitable for those with and without experience.
The day was made up of several different interactive sessions, including a 'pass the parcel' round, where a small group of volunteers from the audience sat in a circle and played a PPI version of the much loved childhood game. The purpose of this game was to demonstrate one of several ways to get a group of children to discuss a particular topic. A game such as pass the parcel is intended to allow all members of the group an opportunity to speak up, and can be used to encourage members of the group who may be a little quieter than others.
There were several young people who are involved in a Young Persons Action Group (YPAG) present, who shared their experiences of both being involved in research, and also sitting on a group that reviews research proposals that involve children. Their biggest tips were to ensure that patient information sheets are aimed at the appropriate age group, and to make sure that there are several for different ages if the study population covers a wide age group. They advised the audience to be cautious about over simplifying patient information sheets, as often if it is lifelong illness, the children involved will be fairly knowledgeable about their condition. On the flip side, there will be things that most people (not just children) will not understand, such as complex methodological terminology, which should be explained in an age appropriate way.
The YPAGs are a forum for researchers to present their ideas to a group of children (aged 8-19) for their feedback. Researchers send in a presentation in advance to the group's facilitator, who reviews it and and offers preliminary advice based on what they have seen. They are then invited to a session to present to the children. Top tips included ensuring that patient information sheets had colour to them, and where appropriate used pictures to either explain the intervention or to explain the whole research process.
One particular highlight from the day was a talk by Sir Ian Chalmers, who has been heavily involved in promoting PPI in children and the wider public. He spoke about the work that is being done both in the UK and in Africa to promote medical research and engagement with research.
The day was very interesting and definitely provided food for thought for the development of SITU's future PPI plans.