Abstract
The case for children and young people’s involvement in health research has been well documented, but less attention has been paid to the experiences and impact of involving children and young people rather than adults. This paper explores these issues in relation to a project undertaken for the James Lind Initiative on the availability, quality and reliability of existing data on young people’s involvement in studies supported by the National Institute for Health Research (NIHR). The project found that there was no systematic way of getting reliable and comparable information about which young people are involved in health research in England, what form that involvement may have taken or the impacts of involvement. There is a need to better collate and disseminate evidence on young people’s involvement in research, using both existing systems and processes, and the possible development of new metrics and measures. Not having this information risks children and young people’s involvement continuing to develop in a piecemeal fashion. Further research is needed about how, when and where children and young people are involved in health research, and about the impact of involvement on research and on the children and young people involved.
Highlights
BackgroundHealth research, as defined by the National Institute for Health Research (NIHR), is ‘research which aims to improve the current and future health and care of the population’ by ‘providing research evidence to inform health and care practice’ (NIHR, n.d.)
NIHR INVOLVE, part of the NIHR Centre for Engagement and Dissemination, recently undertook a mapping exercise and survey (Sonpal et al, 2019) in order to find out more about how, when and where children and young people are involved in English health and social care research. This project identified a diverse range of active young persons’ advisory group (YPAG), and other involvement of children and young people across England, and explored the benefits and challenges faced by health and social care researchers involving children and young people in their work
An evaluation of the GenerationR YPAGs by the National Children’s Bureau (Wallace and Eustace, 2014) found that the YPAGs had contributed to a significant number of research proposals, almost half of which informed research at the funding application stage (48 per cent), and 38 per cent after projects had gone through ethical review and were adopted into the NIHR portfolio (Wallace and Eustace, 2014)
Summary
This project identified a diverse range of active YPAGs, and other involvement of children and young people across England, and explored the benefits and challenges faced by health and social care researchers involving children and young people in their work It was a scoping, rather than a comprehensive mapping, exercise, and there is still a need to collate, understand and disseminate more comparable evidence on the nature, extent and impact of children and young people’s involvement in research (Brady and Preston, 2017). In 2017, the authors were commissioned by the James Lind Initiative to explore children and young people’s involvement in the design and delivery of research studies adopted by the NIHR Clinical Research Network: Children (CRN Children) (Brady and Preston, 2017) The purpose of this project was to find out what information was available on how and when children and young people were involved in research, and what difference this involvement makes to research, and to the children and young people involved. These semi-structured conversations explored informants’ views on monitoring and evaluation systems used to record involvement activities, the feasibility of systematically collecting and collating data on the nature and impact of children and young people’s involvement, and the key opportunities and challenges in doing so
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