NIHR Medicines for Children Research Network MCRN

1
Consumer Involvement
Jenny Newman Consumer Liaison Officer
2
Introduction

• Consumer Involvement Structure
• Consumer Involvement in MCRN Committees
• Study Adoption Committee
• Clinical Studies Groups
• Children Young Persons Group
• Consumer Involvement in LRNs Key Activities

3
Consumer Involvement in the MCRN
MCRNCC Board
NIHR CRN PPI Steering Group
MCRN Young Persons Advisory Group
MCRN Consumer Involvement Steering Group
MCRN Study Portfolio
Clinical Study Groups
LRN Consumer Activities
Clinical Trials Units
Study Adoption Committee
Trial Steering Groups
4
Consumer Involvement in MCRN Committees

• 6 parent/carer representatives members of Study
  Adoption Committee
• 6 parent/carer representatives members of
  Consumer Involvement Steering Group
• Currently there are 35 parent/carer
  representatives on MCRN CSGs
• Currently there are 21 young members of the MCRN
  CYP group, approx 15 members attend each session

5
Taking part the role of children young people
in the MCRN
MCRN Children Young Persons Advisory Group
Help MCRN interpret and disseminate research
findings of interest to children families
6
Practical example of consumer involvement working
with LRNs CSG
Quality of Life Parents Childrens Focus Group

• Aim of the evening To invite parents to have
  their say on the importance of the Quality of
  Life of Children with Cerebral Palsy other
  causes of Increased Tone.

I dont think we could have got this quality of
information on such an important topic in any
other way. (Professional)
7
Jenny NewmanMCRN Consumer Liaison
OfficerMedicines for Children Research Network
Coordinating CentreUniversity of
LiverpoolInstitute of Child HealthAlder Hey
Children's HospitalEaton RoadLiverpoolL12
2AP Tel [phone] Mob [phone]
Fax [phone] Email jennifer.newman_at_mcrn
.org.ukWeb www.mcrn.org.uk