April StaR Forum - Jennifer Preston

Involving children and young people in the design and delivery of paediatric clinical research

Outline:

• Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously. This is usually badged under the umbrella terms ‘participation’ or ‘involvement’.
• Children and young people’s participation in the design and delivery of paediatric clinical research is fundamental and can help improve research relevance, execution and success.
• One established participatory model is through the forum of a Young Person’s Advisory Group.
• Until recently there was very little information to guide the successful development and operation of a YPAG.
• An online toolkit informed by practice provides a harmonised step-by-step guide to the establishment and operation of a YPAG.

Session Description:

Historically children and young people have been under-represented in paediatric clinical research due to them being considered a vulnerable group that required protection. This changed with the introduction of the Paediatric Regulation (No 1901/2006) and via the creation of an international research infrastructure to deliver paediatric research. An inherent part of research design and delivery is Patient and Public Involvement (PPI), defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. It refers to the proactive involvement of patients and the public in research, rather than the use of people as participants in research or as research subjects. It is founded on the principle that people have a right to express their views on matters that affect their lives and it has been shown to enhance the quality, appropriateness, and relevance of health research.

How to meaningfully involve children and young people requires several considerations and is dependent on the purpose, context, the decision-making processes concerned, which in effect will impact upon the level of involvement (consultative, collaborative, or child-led).

In this webinar, I will discuss our efforts in the UK to create a collaborative model to meaningfully involve children and young people in the design and delivery of paediatric research. I will present the Young Person’s Advisory Group (YPAG) model created in 2006, which is just one model on how to involve children and young people. I will provide an overview of why we chose this model and lessons learnt, explain the role of a YPAG, and highlight some of the challenges and successes, some of which will apply to any type of involvement activities with children (including safeguarding, ethics, resources etc.).

Speaker Bios:

Jenny is a senior Patient and Public Involvement manager at the University of Liverpool, based at Alder Hey Children’s Hospital in Liverpool.  Her main role is to deliver a strategy for the involvement and engagement of children and young people and families in the design and delivery of paediatric health research in the UK, Europe and Internationally.  Current projects include, coordinating and facilitating a National Young Persons’ Advisory Group called GenerationR Alliance, which has enabled 100’s of young people to have a voice in research design and delivery; senior patient involvement lead on a six-year multidisciplinary public-private initiative conect4children (c4c), which is a large collaborative paediatric network that will facilitate the development of new drugs and other therapies for the entire paediatric population in Europe; co-founder of a European Young Person’s Advisory Group Network (eYPAGnet) to empower young people and families across Europe to contribute to paediatric health research, and Executive Lead for the NIHR Children and Young People MedTech Co-operative (CYPMedTech) to advance medical technologies for children and young people.

In March 2020 Jenny successfully obtained a fellowship to study part-time for a PhD to explore children and young people’s perspectives of their involvement in the design and conduct of paediatric clinical studies.

Resources for Attendees:

• Chan, W., Thurairajah, P., Butcher, N., Oosterwijk, C., Wever, K., Eichler, I., Preston, J. (2020). Guidance on development and operation of Young Persons’ Advisory Groups. Archives of Disease in Childhood, archdischild-2019-318517. doi: 10.1136/archdischild-2019-318517
• Gaillard, S., Malik, S., Preston, J., Escalera, B. N., Dicks, P., Touil, N., . Kassaï, B. (2018). Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges. Fundam Clin Pharmacol, 32(4), 357-362. doi: https://doi.org/10.1111/fcp.12360
• Wilson, O., Daxenberger, L., Dieudonne, L., Eustace, J., Hanard, A., Krishnamurthi, A., Quigley, P., and Vergou, A. (2020). A rapid evidence review of young people’s involvement in health research. London: Wellcome - https://wellcome.org/reports/involving-young-people-health-research
• GenerationR Alliance/eYPAGnet Toolkit - https://eypagnet.eu/toolkit/