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Report on evaluating the extent and impact of young people’s involvement in research

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:

  • Most of the information collected is about the stages of research in which people have been involved, but there is hardly any information on who was involved and how;
  • There is currently no way of finding out which young people were involved in CRN Children studies, whether studies had involved young people rather than their parents, or what difference any involvement may have made.

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.