Presentation to Academic Paediatrics Association Conference 2015

1. Louca-Mai Brady
#APA2015
@louca_mai

2.  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)
 Participation/involvement 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)
Participation Works
What do we mean by
involvement?

3. 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

4. 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.  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
UN Convention on the Rights
of the Child (UNCRC)

7. General comment on Article 24
Article 12 highlights the importance of children’s participation...This
includes their views on all aspects of health provisions, including, for
example, what services are needed, how and where they are best
provided, barriers to accessing or using services, the quality of the
services and the attitudes of health professionals, how to strengthen
children’s capacities to take increasing levels of responsibility for their
own health and development, and how to involve them more effectively
in the provision of services, as peer educators. States are encouraged
to conduct regular participatory consultations, which are adapted to the
age and maturity of the child, and research with children, and to do this
separately with their parents, in order to learn about their health
challenges, developmental needs and expectations as a contribution to
the design of effective interventions and health programmes” (UN,
2013).

8. Rights in legislation, policy and
practice
 1989 Children Act
 2014 Children and Families Act
 Children’s Health Outcomes Forum
 YP’s participation in national NHS structures and
processes
 Tools and quality criteria: Hear by Right, You’re
Welcome, Young People Friendly
 Continued NIHR commitment to public involvement
& increasing interest in public involvement with CYP
 Campaigning work of organisations working with
CYP and young people’s groups

9. “This expectation for patient and public
participation has no age limit. Children and
young people…should be encouraged and
facilitated to participate in decisions about their
own care and, more broadly, about the health
and social care services and policies that
affect them”.
Annual Report of the Chief Medical Officer
2012 - Our Children Deserve Better:
Prevention Pays (DH, 2013).

10. INVOLVE supports
public involvement in
NHS, public health and
social care research
INVOLVE conference 2012
www.involve.nihr.ac.uk

11. What we aspire to:
A dynamic partnership between
the public, researchers and others,
to advance NHS, public health and
social care research and improve
the health and well being of the
population
A national advisory group funded
by, and part of, the National
Institute for Health Research.
What is INVOLVE?
Simon Denegri
Chair of INVOLVE &
NIHR National Director for
Public Participation and
Engagement in Research
How we do it:
 INVOLVE Strategy 2012–15
 Annual operating plans
 INVOLVE Members
 INVOLVE Coordinating Centre
 Annual Budget approx £750k

12. 29 current INVOLVE members
 service users
 carers
 members of the public
 researchers
 public involvement specialists
 research managers
 health and social care practitioners
 people from voluntary sector
organisations
INVOLVE members
INVOLVE members 2013
See: www.involve.nihr.ac.uk/about-involve/who-are-involve/

13. LEAD across
the National
Institute for
Health Research
Build and
share the
EVIDENCE
BASE
Develop
CAPACITY
and
CAPABILITY
Influence
research
POLICY and
PRACTICE
WORKING IN PARTNERSHIP
Work of INVOLVE

14. LEAD on public involvement across the NIHR
INVOLVE supports shared learning
groups for public involvement with:
 NIHR Research Programmes
 NIHR Collaborations for Leadership
in Applied Health Research and Care
Sharing knowledge
and experience
INVOLVE’s
mailing list
4,000+ people
40+ countries
Responding to individual
enquiries from members
of the public, researchers
and others

15. Build and share the EVIDENCE BASE
Evidence Library
www.involve.nihr.ac.uk/resource-
centre/evidence-library/
An on line database of nearly 300
summaries of reports on the nature,
extent, impact and reflections on public
involvement in research.
invoNET
www.involve.nihr.ac.uk/invonet/
A network of 200+ people with a
shared interest in researching public
involvement in research.
invoNET 2012

16. Develop CAPACITY and CAPABILITY
Briefing Notes for Researchers:
www.involve.nihr.ac.uk/resource-
centre/resource-for-researchers/
INVOLVE Conference
www.involve.nihr.ac.uk/news/confe
rence/
Visit: www.involve.nihr.ac.uk

17. Influence research POLICY and PRACTICE
•facilitating and leading on coordination of
public involvement across the NIHR
•developing new and existing partnerships
and alliances to promote public involvement
in research.
•improving accessibility of research to the
public

18. 3 things you can do:
1. Sign up to receive our newsletter
and email alerts: www.involve.nihr.ac.uk/about-
involve/keep-in-touch/sign-up-for-mailing-list/
1. Explore our websites:
 www.involve.nihr.ac.uk
 www.peopleinresearch.org
2. Contact us INVOLVE:
Telephone: 023 8065 1088
Email: admin@invo.org.uk

19. Editors-in-Chief:
Sophie Staniszewska (UK)
Richard Stephens (UK)
researchinvolvement.com
biomedcentral.com
• High visibility – permanent,
unrestricted, free online access
• Respected Editorial Board
committed to the values of
Involvement and Engagement
• Rapid and thorough peer review
• Only international journal
co-produced by patients and
researchers

20. Why involve children and YP in
research?
 Involving those on whom
research is focused can have
a positive impact on what is
researched, how research is
conducted and the impact of
research findings (Staley, 2009)
 Increasing recognition that involving children and young
people in research is not the same as involving adults
 Debates in patient and public involvement about who
does, and who doesn’t, get involved in research
 Tom’s story: http://www.invo.org.uk/thisismystory/

21. How we see children and YP
 Objects of inquiry, vulnerable,
adults-in-waiting or ….
 social actors + childhood a social
space in which children can
and do have agency?
 Development of research with children and young
people has coincided with the development of the
children's rights movement , reflected in policy,
legislation and practice
 Increasing interest in children’s involvement in
research, both as sources of data and through their
active involvement in the research process

22. A model of children and young people’s
involvement in research (NCB, 2011)
CYP have increasing control of the research process
CYP have
ownership of
the research
CYP are
sources of
research
data
CYP are actively involved in aspects of the
planning and process of research
CYP are
research
participants
CYP are
collaborators in
the research
CYP are
consulted about
the research

23. Practical and ethical considerations
Recruitment
Gatekeepers and role of parents and carers
Consent and data protection
Availability
Communication
Induction, training and support
Reward and recognition
Child protection, safeguarding and safety

24. Clinical Research Network
Children
24
Patients as Partners

25. Clinical Research Network
Children
•Learn about health/clinical research in monthly meetings
•support and work in partnership with researchers in the
delivery of health research
•provide input and collaborate with key organisations
such as National Research Ethics Service (NRES), Royal
College Paediatrics Child Health (RCPCH), NIHR Clinical
Research Facilities (CRFs), R&D within Hospitals,
Academic Health Science Networks (AHSNs) to promote
the research agenda and more importantly the
involvement and engagement of young people in their
processes
•Video: http://www.crn.nihr.ac.uk/children/pcpie/young-
persons-advisory-group/
Role of the group

26. Clinical Research Network
Children
Key Achievements
Improving
the quality of
studies
Ethical
Guidance
Outreach
& Awareness
in the
Community –
Science Fairs,
Conferences, School
visits
Awareness
Raising &
Education

27. www.decipher.uk.net
ALPHA – Advice Leading to Public
Health Advancement
The work was undertaken with the support of The Centre for the Development and Evaluation of
Complex Interventions for Public Health Improvement (DECIPHer), a UKCRC Public Health Research
Centre of Excellence. Joint funding (MR/KO232331/1) from the British Heart Foundation, Cancer
Research UK, Economic and Social Research Council, Medical Research Council, the Welsh
Government and the Wellcome Trust, under the auspices of the UK Clinical Research Collaboration, is
gratefully acknowledged.

28. www.decipher.uk.net
DECIPHer has infrastructure funding for public involvement. Benefits to this
model are:
• Employment of staff specifically to support public involvement.
• Finances to resource public involvement (paying for transport etc.) and
incentives.
• Develop long term relationships between young people and researchers.
• Engage in reflective practice so continuously learning about involvement.
• Involve public during project bid development which is often hard to
finance. So researchers get a FREE session during bid development but
must cost group into bid for on-going sessions to ensure sustainability of
group.
• Video and more info: http://decipher.uk.net/public-involvement/young-
people/

29. www.decipher.uk.net
• 15-25 young people aged 14-21 from South Wales advise on public
health projects.
• Recruited through youth clubs and youth development projects.
• Meet on Saturdays at Cardiff University for 10 months of the year and
have a weekend residential. Do not meet May to middle of June due to
exams.
• Initial training about public health and research. On-going training as
needed/requested by young people.
• Since April 2012 had 28 meetings with an average of 9 attendees.
• Involved in 19 projects, several on two or more stages of the research
cycle.
• Worked with Welsh Government on an International Survey and NIHR as
reviewers.
• Co-authored 4 DECIPHer blogs, 1 article for INVOLVE and produced 3
films.

30. www.decipher.uk.net
Example Project – Exposure to alcohol advertising through social media
February 2013 (bid development free session) – 11 young people – issues with
confidentiality; seemed a lot of hassle to upload software onto computer;
incentives important.
June 2014 – 10 young people - Developing up the name and
mascot for the study – Digi Booze Ad; expressed how
important the study recruitment materials would be.
October 2014 – 6 young people - helped to write and design
the consent forms, participant information booklet and
leaflet. Currently these are with ethics committee.
Future work – Money to include more sessions with young people as
needed for example with recruitment and retention.

31. : our voices, our health
 A Wellcome-funded project by NCB Research Centre
with the Public Health Research Consortium, supporting
20 young people to contribute to UK public health
research and policy
 Worked with public health researchers, policymakers and
research bodies
 Produced research summaries and
guidance
 Spoke at events and conferences
 Commissioned own research project
 Organised a conference
 Website with more info & evaluation
(www.ncb.org.uk/PEAR)

32.  Supporting young people’s involvement in an
adaptation and feasibility study of an intervention
for young people who misuse alcohol and drugs
 Initial aim: set-up & run a national advisory group
(YP with experience of alcohol/drug services) to
work with researchers throughout the project
 Best laid plans! – this model did not work
as we hoped so we have developed a
more flexible & localised model
YPAGs are not the only model

33.  YP’s involvement has been extremely helpful and has
informed key elements of the intervention
 Need YP with specific experience but this is a group who
can be difficult to access and to keep engaged
 The support and engagement of services has been crucial
 Traditional advisory group model in one location hasn’t
been effective or accessible, and also not been possible
for many YP to have l/t, on-going involvement
 Flexible, local and YP-centred engagement has worked
better – starting where YP are if possible
 But YP also want to meet the whole team and each other
 Managing sensitive nature of topics discussed and
personal nature of the work.
What we’re learning

34. Challenging the myths – young people’s views
 Research is too difficult for young people to understand
– give us training and support and think about how you can
make information clear and accessible. Then we can understand
a lot more!
 Young people don’t have the skills and knowledge that adult
researchers have
- but adults can assume that they know what matters to young
people, and what questions to ask them. We have expertise in
being young people, and you may learn something from us!
 My boss/ the person funding the research will like it
– don’t do it just because you think it looks good! Be clear about
the benefits for the research and us, and be really committed to
involving us properly

35. Planning involvement
Are there particular groups of CYPFs you could or
should involve?
What type or model of involvement would be
appropriate for your research/the CYPFs you wish to
involve?
Is it possible to consult other CYPFs on your
proposed plans?
And what stages of the research, and in what roles,
could CYPFs be involved?
Is involvement adequately resourced (costs, staff
time etc) or is the involvement planned possible
within available resources?
Do you have sufficient involvement expertise within
the team, or know where to access this?

36. More information
INVOLVE webpages on CYP’s involvement:
http://www.invo.org.uk/find-out-more/involving-children-and-
young-people/
+ Spring 2015 newsletter focused on CYP involvement
Young Health Participation: Blog about CYP’s
participation in health services and research, including
presentations, guest posts from young people and further
information: www.younghealthparticipation.com
@louca_mai