How can we get better at reporting PPIE in child health research?

Monday 7 August 2023

At NIHR CYP MedTech, we are dedicated to supporting research that empowers children and young people by actively engaging them in the research process from beginning to end. Our Patient and Public Involvement and Engagement (PPIE) Executive Lead, Jenny Preston, has published a fantastic article in the peer-reviewed journal, Research Involvement and Engagement, entitled, ‘Reporting of involvement activities with children and young people in paediatric research: a framework analysis’.

The authors reviewed 32 studies funded by the National Institute for Health and Care Research (NIHR) that described activities to involve children aged 0 – 24 in advisory roles. Their analysis found that there is room for improvement when it comes to reporting patient and public involvement in health research, with only 12% meeting all of the recommended guidelines set out by the NIHR.

Many studies left out key details needed to interpret the involvement, such as who was involved and how, the results of involving young people, and the impact on young people as a result of them engaging in research. When studies did report impacts, they focused on the experiences of the young people such as gaining skills, meeting others with similar health conditions and feeling heard, rather than reporting the impact on the research itself and the researchers. The authors highlight that in order to build a robust evidence base on meaningful engagement of young people in research, high-quality reporting is vital.

This study provided helpful tools and recommendations for researchers, including a participation matrix and reporting checklist, to aid meaningful reporting of patient and public involvement. The authors also suggested that researchers seek feedback from young people directly to evaluate their experience with PPIE, and work together to develop best practice for collaboration. By offering solutions such as funders requiring researchers to use standard reporting tools, the authors highlight how meaningful reporting can help translate PPI policy aspirations into reality.

The authors highlight how young people can have a meaningful impact on health research at various stages of the process, illustrated by the Participation Matrix above.

The key points of the article are as follows:

  • Involve children and young people throughout the different phases of a research project (if feasible) not just where you require an opinion
  • Impacts are huge and should not just be focused solely on the research itself, consider how this affects young people and how their involvement helps them have their voices heard.
  • Tools like the participation matrix and accompanying tools can be used in the planning of activities, and support transparent reporting
  • Funders such as the NIHR should look to mandate the use of standard reporting tools where applicable

To read Jenny’s paper and learn more about this crucial area of child health research, please use the link below.