PATIENT INVOLVEMENT

We aim to include children, young people, and families at every stage of the innovation pathway

OUR ETHOS

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.

We believe that PPIE is fundamental to the successful development and delivery of technologies for child health.

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.

Our ethos is to ensure that children, young people, families are involved at every stage of the innovation pathway. We work closely with both local and national patient involvement groups.

PPIE LEAD

JEN PRESTON

Jen Preston leads our PPI 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 Young Person’s Advisory Group (YPAG) in 2006 and currently co-ordinates the GenerationR Alliance.

GENERATION R

GenerationR consists of 17 Young People’s Advisory Groups (YPAGs), based around the UK. The YPAGs meet regularly to learn about health research and discuss how to make it work better for young people.

GenerationR has enabled hundreds of young people to have a voice in research design and delivery both nationally and internationally.

GenerationR is funded by the National Institute for Health Research.

PPIE STRATEGY

Our five year PPIE strategy includes the following strategic priorities:

  • Work in partnership with children, young people, families, and members of the public in the design and delivery of paediatric medical technologies
  • Continuously improve through patient experience and public awareness
  • Widen participation and involvement of children, young people, families in NIHR CYP MedTech activities
  • Grow the evidence base of the impact of children, young people, family involvement and engagement in the design and delivery of paediatric technologies
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