Patient & Public Involvement

Meaningful patient and public involvement with
children, young people, and families

Defining how meaningful Patient and Public Involvement (PPI) is realised in practice, (especially where child and young patients are concerned) is limited partly due to the low-level reporting of the processes and outputs of PPI activities in general. Improving how we evaluate and report PPI with children, young people (CYP) and families is essential to inform what meaningful PPI looks like in practice. Key stakeholders in the research eco-system (i.e., patients, researchers, regulators, funders, etc) need to have a better understanding of the different levels and roles CYP and families can have within the design and conduct of paediatric research, and we need to reflect and systematically report PPI activities and outputs so we can continuously improve our PPI practice for those who get involved.

Building an evidence base of meaningful PPI practice

To address the issue of the low-level reporting of PPI (specifically PPI with CYP) Jenny Preston (Member of the c4c PPI Working Group) undertook a framework analysis of 32 studies funded by one of the main funding bodies in England. The analysis focused on published reports that described activities involving CYP aged 0-24 in advisory roles.

The key findings highlighted that there is room for improvement when it comes to reporting PPI with CYP, with only 12% of the studies meeting all the recommended reporting guidelines set out by the funder. Many studies left out key details needed to interpret the involvement, such as who was involved and how, the results of involving CYP, and the impact of involvement on CYP. When studies did report impacts, they focused on the experiences of the CYP 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 analysis highlighted that to build a robust evidence base on meaningful involvement of CYP in health research, high-quality reporting is vital.

How do the findings support PPI activities in conect4children?

conect4children (c4c) strongly advise that PPI with CYP and/or families should be conducted for all clinical trials with CYP as participants. Key findings and lessons c4c could learn from include:

Involve CYP and/or families throughout the different phases of a clinical trial (if feasible) not just where you require a one-off opinion.
Impacts are huge and should not just be focused solely on the research itself, consider how this affects CYP and/or families and how their involvement helps them have their voices heard and ultimately acted upon.
Tools like the Participation Matrix (Diagram 1) can be used in the planning of PPI activities, and support transparent reporting.
Funders and paediatric networks (such as c4c) should look to mandate the use of standard reporting tools where applicable so that PPI policy aspirations are turned into reality.