It’s been a few days now since the launch of our new report on children and clinical research but it is still keeping us busy, sending out materials and following up good conversations that were had on the day and that have happened since.
Our aim with this event was that it should embody the spirit of the report – that children and young people have important voices that should be heard! As well as giving the audience a quick fire summary of our main conclusions and recommendations, ably presented by Working Party members Vicki Marsh and Liz Davies, we wanted everyone to hear from some of the brilliant young people who have been involved throughout the project and who helped us write the report, turn it into a magazine and create an animation.
Listening to Natasha Wilcock, Esme Lynch and Ellis Richardson being interviewed by our Working Party chair Bobbie Farsides about the role of young people reviewing research, you could have almost suspected them of reading out scripted answers. Not one bit! Hearing from them throughout the project, it’s become absolutely clear (and shame on us if we were surprised!) that these and many other young people, both with and without personal experience of research, really are that thoughtful, eloquent and able to reflect critically both on complex research proposals, and about how they and their peers might relate to big questions and decisions about research (see, for example, our Youth-REC films).
Hannah Garnett, Evie Rothwell and Robin Blair who were part of a group that helped us plan, script and voice our animation were interviewed by our Senior Research Officer-turned-in-house reporter Kate Harvey (who’s also written a blog post about making the animation). Hannah, Evie and Robin emphasised that children and young people are often the ones best placed to help us communicate in a way that is interesting (and fun!) for other young people (…and that good biscuits are important too). This was the first time many in the audience had seen the animation, and we’ve been really chuffed with all the positive responses we’ve heard since.
Thines Ganeshamoorthy was one of the participants at our first stakeholder meeting and continued to feed back on the Working Party’s thinking at various stages of the project. He joined the panel in the final session along with Phillippa Farrant, another member of the stakeholder group, and both reflected on the report and how it chimed with their experience of clinical research. Thines (fortunately) concluded that:
To bring in some of the voices that couldn’t be there in person we set up two listening stations playing audio clips from interviews with members of the Liverpool-based Young Person’s Advisory Group. The clips, covering a range of issues from the ideal researcher to good ways of providing information and how to handle situations where parents and children disagree about participation, are also on our website – have a listen!
Needless to say we have also had a lot of input from people who aren’t quite as young, including parents and a range of professionals with vast experience and knowledge relating in various ways to this topic. Some highlights from what we heard were displayed on posters in the room (and you can download them here).
There was time for a Q&A at the end with some of the members of the Working Party, Vicki Marsh, Liz Davis, Sue Tansey, Imelda Coyne and Bobbie Farsides as the chair, but judging from the number of hands going up, there could have been time for plenty more – and we know that the discussions continue.
It was clear from what was said at the event as well as many of the discussions on twitter (summarised in this Storify) and elsewhere that our report will, hopefully, help get the ball rolling (or perhaps rolling faster) in promoting the involvement of children, young people and their parents in research so as to facilitate more and better research to improve healthcare for children and young people. We will certainly do our bit to get the word out about our conclusions and recommendations.
We put up a poster in the room inviting attendees to tell us what they think should happen next. Some of the responses included:
Do leave us a comment below this post if you think about anything else!
See more pictures from the event on our facebook page