This document provides information about a networking event for those involved in involving children and young people in health and social care research. The event aims to allow participants to share experiences and learn from each other. Background information is provided about the author, including their experience in embedding children and young people's participation in services and research. Key definitions around public involvement in research from INVOLVE are also summarized.

1. People and Research West of England
Children and Young Peoples
Participation Network
20th November 2013

2. Today:
Chance for those involving children and
young people (CYP) in health and social
care research and/or interested in patient
and public involvement (PPI) to:
•hear about others’ work
•explore some of the common issues of
involving CYP in research
•Share and learn from others’ experiences

3. My background
• PhD: embedding CYP’s participation in
health and social care services
• Member of INVOLVE
• Freelance researcher, including work on
PPI
• Background in applied social research,
including leading on CYP’s involvement at
NCB Research Centre

4. Young Health Participation
• Blog about CYP’s participation in health
and social care, including presentations
and reports from recent workshops:
www.younghealthparticipation.com
@louca_mai
louca.brady@uwe.ac.uk

5. Defining public involvement
INVOLVE define ‘public involvement as:
“research being carried out ‘with’ or ‘by’ members of
the public rather than ‘to’, ‘about’ or ‘for’ them”
The public are defined as including:
“patients, potential patients, carers and people who
use health and social care services as well as people
from organisations that represent people who use
services… [as distinct from] people who have a
professional role in health and social care services”
INVOLVE (2012). Briefing notes for researchers. www.invo.org.uk

6. INVOLVE definitions
• Involvement: Where members of the
public are actively involved in research
projects and in research organisations
• Participation: Where people take part in a
research study
• Engagement: Where information and
knowledge about research is provided and
disseminated
INVOLVE (2012). Briefing notes for researchers. www.invo.org.uk

7. • Consultation is the process by which
children and young people are asked their
opinions – on a specific issue or broader
agenda (eg as research participants)
• Involvement/participation is the process by
which individuals and groups of individuals
can influence decision-making and bring
about change (eg through involvement in the
planning and process of research)

8. UN Convention on the Rights
of the Child (UNCRC)
• Article 12 . Every child and young person has the
right to express his or her views freely in all matters
affecting them
• Article 13. CYP have the right to freedom of
expression, including the right to all kinds of
information and ideas
• Article 24: CYP have the right to good quality
health care and information to help them stay
healthy