Evaluating the extent and impact of young people's involvement in National Institute for Health Research (NIHR) studies: an assessment of feasibility

A report on Generation R, a national Young Person‘s Advisory Group (YPAG) (GenerationR, 2014), identified the need ‟to develop a systematic way to measure the impact of [young people‘s] involvement activities” (Recommendation 10, GenerationR, 2014). Following previous unsuccessful attempts to address this issue, the James Lind Initiative commissioned this project to investigate the feasibility of measuring young people‘s involvement in National Institute for Health Research (NIHR) studies. The project sought to identify data currently collected on the nature and impact of young people‘s involvement by the NIHR Clinical Research Network: Children (CRN Children), and consider the scope for future data collection across NIHR. Stage 1 of this work assessed the availability, quality and reliability of existing data in the CRN Children portfolio through analysis of data available through the CRN Central Portfolio Management System (CPMS), the CRN Closed Study Evaluation Survey and the GenerationR YPAGs. A significant finding is that there is currently no way of identifying through existing CRN data collections or via GenerationR YPAGs which studies have involved young people, or indeed whether studies have involved young people in addition to parents, let alone assessing what form that involvement may have taken, who was involved or any impacts of involvement. Stage 2 involved a qualitative exploration of the issues and questions which had emerged from Stage 1 through conversations with key stakeholders from across NIHR. This work identified a need to better collate, understand and disseminate data on the nature and impact of young people's involvement in research using both existing systems and processes and the possible development of new metrics and measures. We found that NIHR data collection systems currently provide little scope to do more than identify whether or not there has been any public involvement. But there is potential within existing systems and processes to collect comparable data across studies on the nature, impact and influence of public involvement. This includes the suggested addition of a demographic measure on public involvement in the CPMS and the Integrated Research Application System which informs it, and in monitoring information including ResearchFish. NIHR funding applications, monitoring and reports also offer potential for secondary qualitative analysis of 'free text‘ information on the nature and impact of public involvement. A study recording form developed as part of an evaluation of the GenerationR YPAGs could be used to collect comparable information on the nature and impact of researchers‘ work with YPAGs. Further research could address many of the issues raised and have wider applicability across NIHR public involvement, as well as generating specific learning on the nature, extent and impact of young people‘s involvement in research.