By Liverpool YPAG,
Following the GenerationR event in 2013, a report was written that highlighted 11 recommendations that reinforced several important recommendations for the involvement of children and young people in improving the design, development and delivery of paediatric research in the UK and beyond. One of the recommendations was to develop a systematic way to measure the impact of young people’s involvement activities.
This project, commissioned by the James Lind Initiative, looked at young people’s involvement in the design and delivery of research studies adopted by National Institute for Health Research (NIHR) Clinical Research Network: Children (CRN Children). The researchers, Jenny Preston and Louca-Mai Brady, wanted to find out what information was available on how and when young people are involved in health research, and what difference this involvement makes to research and to the young people involved.
We looked at the information CRN Children and the GenerationR Young People’s Advisory Groups collect on when and how young people are involved in research, and then talked to professionals who work in public involvement. We found that:
The report, available to download here, makes recommendations about how NIHR could find out more who is involved in research and how, as well as what difference this involvement makes to research and to the young people involved.