From perspectives to priorities

This dissertationof Laura Postma explores how children and young people (CYP) can be meaningfully involved in shaping the future of pediatric research. Involving CYP in research—also known as Patient and Public Involvement (PPI)-is becoming more common, but questions remain about what kind of impact their involvement actually has.

The goal of this research was to better understand and improve how CYP are included in creating Pediatric Research Agendas-lists of topics researchers should focus on, based on what really matters to children and young people. The study looked at both how CYP are involved and what kind of impact that involvement has—on the research, on the young people themselves, and on future academic studies.
Key findings include:

• Both children and researchers believe it’s important to involve children early in research-but they have different views on how to prepare and reward them.
• Most studies involving CYP use the same method (the James Lind Alliance approach), but few actually measure the impact of involving young people.
• Young people not only contribute valuable ideas, but also grow personally-learning to collaborate, listen, and gain confidence.
• The involvement of vocational students in analyzing interviews added depth and created social value by bridging gaps between education levels.
• A new method was developed to measure the academic impact of these research agendas-such as how many studies used the topics set by young people.
• Specific tips were created for involving CYP in setting priorities more effectively, based on their real experiences.

The overall conclusion: Involving children and young people in research not only improves the quality and relevance of that research, but also helps empower the next generation. However, we need better systems for measuring impact and making sure their voices truly shape research in the long term.

Laura Postma is part of Health in Context.