PATIENT INVOLVEMENT
PATIENT INVOLVEMENT
Our Ethos
Ensuring the voices of children, young people, and their families remain at the centre of innovation is one of the founding principles of the NIHR HRC in Paediatrics and Child Health.
Patient and public involvement and engagement (PPIE) involves carrying out research ‘with’ or ‘by’ patients or members of the public, rather than carrying out research ‘about’ or ‘for’ patients or members of the public.
The involvement of children, young people, and their families ensures that technology is developed for and with the user, adopted more rapidly, and better accepted into clinical practice.
We ensure that children, young people, and families are involved at every stage of the innovation pathway.
We work closely with both local and national patient involvement groups to support the inclusion of children, young people, and their families.
Groups
GENERATIONR
GenerationR is a group of 17 NIHR funded Young People Advisory Groups (YPAGs) based around the UK.
STRATEGY BOARD
The NIHR HRC in Paediatrics and Child Health Children and Young People’s Strategy Board
AI YOUTH COUNCIL
A group of children and young people discussing how artificial intelligence is used in health and care, and how it should be used in the future.
Resources
PPIE STRATEGY
Our PPIE strategy outlines our aims and objectives for working with children, young people, and their families.
RESEARCH INCLUSION STRATEGY
Our Research Inclusion strategy outlines our approach to creating a more inclusive research environment for families and professionals.
PUBLICATIONS
Our team’s peer-reviewed publications relating to PPIE and research inclusion.
Team
JEN PRESTON
PPIE EXECUTIVE LEAD
Jen Preston leads our PPIE work. For 15 years, Jen’s main role has been to develop and implement a strategy for involving children, young people, parents, and carers in the design and delivery of paediatric research. Jen set up the first ever NIHR GenerationR YPAG in 2006 and currently co-ordinates the GenerationR Alliance.
DR GEMMA WHEELER
SENIOR PROJECT MANAGER
Dr Gemma Wheeler is our Senior Project Manager, overseeing our Patient and Public Involvement and Engagement (PPIE) and research inclusion programmes. Prior to joining the team, Gemma worked as a Design Researcher at Lab4Living, Sheffield Hallam University, exploring how to foster meaningful, creative collaboration between diverse stakeholder groups in health research.