Patient and Public Involvement and Engagement (PPIE) seeks to involve end users of a service or research outcome at the earliest possible stage. It offers valuable insights into the lived experiences of those affected by a disease or health condition, which can be instrumental in shaping research priorities. In the context of childhood, adolescent, and young adult cancers, individuals with direct experience can not only impact research outcomes but can also help to identify what it is that should be researched.

In paediatric oncology, this role is often taken on by parents or caregivers who have supported a child through treatment and bring a unique, experience-based perspective to the research process. In other cases, the role of the patient is fulfilled by survivors of childhood cancer or by adolescents and young adults during or post treatment.

PPIE empowers patients and families, acknowledging them as experts in their own experiences. By actively involving them in decision-making throughout the research process, we validate their perspectives and ensure that study or service designs truly reflect their needs.

Childhood Cancer Ireland’s PPIE and Reseach Sub Committee is led by Dr Alan Pearson, an expert in the field by both profession and personal experience and helps to realise our vision to become the preferred the point of contact for PPIE, in the context of all forms of childhood cancer, for early and late-stage research taking place in Ireland.