Paediatric clinicians and others in related fields are very aware of including young people in their clinical work, but what about making it happen in research? Following the recent INVOLVE conference, I was asked to write a guest post for the BMJ Archives of Disease in Childhood which briefly outlines why this matters and how it could be taken forward:
Guest Blog: Involving children and young people in health and social care research: the need for a new perspective
Comments and ideas – as always – are very welcome!
I’m still buzzing with ideas after last week’s INVOLVE conference. It was great to launch the social media guidance, which generated some really interesting conversations – watch out for a tweet chat in January, further details to be confirmed. But the focus of this post is on the involvement of children and young people in research (although of course social media does come into this), and I wanted to follow up my last post on this topic with a conference-related update.
I was part of a great session on children and young people’s involvement which was chaired by Erin Walker, who supports the CRN CC Children Specialty’s Young Person’s Advisory Group in London. Fellow presenters included Hayley Reed talking about the exciting work DECIPHer are doing with their ALPHA young people’s research advisory group. Having had links with ALPHA in the past it’s great to see them going from strength to strength and developing some really innovative ways of working with researchers. The final presentation was by Valerie Dunn on ‘engaging young people in care through animation’. More information on the fantastic films she made with young people can be found here.
Both presentations linked really well with the one I co-presented on ‘involving children and young people in research: the usual suspects’. My co-presenters were Lorna Templeton and S, a young advisor to the project. Our presentation (below) focused on our attempts to involve young people in the ‘Youth Social Behaviour and Network Therapy’ (YSBNT) Study*, and explored what we are learning about involving a ‘seldom heard’ group of young people in research:
A few reflections:
It was great to meet so many people with an interest in children and young people’s involvement in research, and to feel that the interest in this area is growing. A few people commented on the lack of children and young people at the conference (a recurring theme), and the need for a specific stream at the conference and/or a dedicated national event on this topic. This has come up in the past (for example here) and is certainly something I’ll discuss further with the INVOLVE advisory group.
- Any other thoughts from people who attended the conference?
- Are others also interested in a community of practice on children and young people’s involvement in research?
*The Y-SBNT project is funded by the National Institute for Health Research HTA programme (project number 11/60/01). The views and opinions expressed in this post are those of the author and do not necessarily reflect those of the HTA, NIHR, NHS or the Department of Health.
Last month I was invited, along with Dan Moxon from People, Dialogue and Change, to present at a one of the regular seminars organised by the UCLan Centre for Children and Young People’s Participation.
The seminar was on children and young people’s participation in health services and research (see flyer:12 May Louca Mai Dan Moxon POSTER). Both Dan and I discussed the work we’re doing in this area and, although a select audience, then had some really interesting discussions with those who attended. The recording of the event can be found here.
In my presentation I explored emerging findings from my research on what it means ‘embed’ children and young people’s participation in health services and research, including reflecting on learning from workshops in July and October last year:
Dan then went on to discuss some of the great work he’s doing in this area:
The discussions that followed raised some really interesting issues, which will inform the next phase of this work. Many thanks to Nigel Thomas and UCLan for hosting. It also very much like the start of a conversation, which you’re very welcome to join via this blog if you couldn’t make it on the day.
Yesterday the National Institute for Health Research (NIHR) published a new five year strategic plan ‘Promoting a research active nation’ setting out a new programme to encourage public engagement and participation in health, social care and public health research.
Simon Denegri, Chair of INVOLVE and NIHR National Director for Public Participation and Engagement in Research, has written a great post on this. Although the strategy applies to children and young people as well as adults it’s great to see involvement being given some specific mentions, given the increasing interest in this area (see my last post):
- In relation to improving patient recruitment
- Working with young people to help design and develop a range of research ‘apps’ that will help enthuse young people about research and encourage their participation in research studies
- Publishing exemplars of how public involvement has improved patient access to research for children and young people