1. Paving the way for a brighter future:
opportunities to involve young people in
healthcare research across
Greater Manchester
Simon Stones
@SimonRStones

2. 113, 250Children aged 16 years and under living in
Manchester
Manchester City Council Forecasting Model (2016)

3. “YOU’RE NEVER
TOO YOUNG TO
CHANGE THE
WORLD”

6. × One size does not fit all.
× People want personal and community support structures.
× Mental health is of equal importance to physical health.
× Self-confidence and self-efficacy are necessary qualities to
change health-related behaviours.
× People highlighted the important legislative powers of local
government, and the role of public sector organisations in
creating the right conditions for people to take charge of their
own health.

9. There are more than 1
million children in the
UK who have a long-
term, or even lifelong,
illness and need
medicines for the
foreseeable future.

10. SELF
What happens during childhood affects health and
wellbeing in later life. We must support young people
to be well equipped to deal with life’s challenges.

11. Ensure full implementation of NICE and SIGN asthma
guidelines across the UK.
Improve asthma education for children, families and
healthcare professionals. Improve training for healthcare
professionals in working with young people.
Deliver school responsibilities to children with asthma (e.g.
implementation of statutory guidance in England,
compared with other nations).
Asthma

12. Ensure joined-up care which meets the wider needs of
children, including appropriate transition to adult
diabetes services.
Ensure full implementation of updated NICE guidance for
HbA1c levels.
Improve diabetes education for children, young people,
families, and healthcare and educational professionals to
decrease stigma and discrimination.
Diabetes

13. If You don’t like
something,
change it…
My involvement in
research as a young
person has inspired
me to actively step
up and make a
difference…
www.ismartresearch.wordpress.com

14. What do we need to do?

15. Young people,
their families
Health and
education
professionals,
researchers and
industry
The third
(voluntary)
sector

16. • Where young people, their families and other
members of the public are actively involved in
research projects and in research organisations.Involvement
• Where information and knowledge
about research is provided and
disseminated to young people, for
example, a science fair or open day.
Engagement
• When young people and
their families take part
in a research study
(formally referred to as
‘subjects’).
Participation

17. × The NIHR expects patient and public involvement to be
embedded throughout all research proposals.
× It is increasingly being recognised as important by other
major funders, and in some cases is a requirement.
× The NHS Health Research Authority will ask how you will
involve patients and the public in your research.
× A budget for patient and public involvement must be costed
and should be ring-fenced.

18. Set research
priorities
Delivering training
to researchers
Review funding
applications
Facilitate
participation
Monitor and
advise
Evaluate and
disseminate
outcomes
Young people
and their
families
Developing
an idea/
research
question
Developing
a research
application
Carrying out
research
Dissemination
and
implementing

19. One-to-one
discussions
Focus groups and
discussion groups
Co-researchers /
research partners
• University Research User Groups
• Consortium Stakeholder Groups
• NIHR GenerationR
• NIHR Patient Research Ambassadors
• eYPAGnet
• International Children’s Advisory Network
• INVOLVE
• NIHR CRN Clinical Studies Groups
• Patient organisations / charities
Through existing groups and
social media
Advisory and
reference groups

21. Patient Research
Ambassadors:
Young people working
locally, nationally, and
internationally to
promote research.

22. Patient Research
Ambassadors:
Families working locally,
nationally, and
internationally to
promote research.
bit.ly/patientresearchambassador

23. Manchester’s young
people’s research
advisory group
Facilitated by the Public
Programmes team at the
Clinical Research Facility, this
new group will enable young
people to shape research
across Greater Manchester.

24. YOUR RHEUM
A Manchester-based group
with a national reach,
enabling young people to
influence paediatric and
adolescent rheumatology
research.
A group for 11 to 24
year olds across the
UK with diagnosed
rheumatic
conditions to advise,
input and shape
current adolescent
and young adult
rheumatology
research.

25. www.theproudtrust.org
www.manchesteryouthcouncil.co.uk
www.thefactoryyz.org
www.wiganyouthzone.org
www.manchesteryounglives.org.uk
www.42ndstreet.org.uk
www.m13youthproject.org.uk
www.manchestercommunitycentral.
org/young-people-network-pagewww.gmyn.co.uk
www.greatermanchester-ca.gov.uk/
Youth Combined Authority (YCA)
Some of the many groups in Manchester…

26. The NIHR-funded TRECA
study has developed
multimedia information
(MMI) resources with
text, animations, videos
and diagrams to inform
children, adolescents
and parents about
clinical trials.

27. “GIVE YOUNG PEOPLE A
GREATER VOICE. THEY ARE
THE FUTURE AND THEY
ARE MUCH WISER THAN
WE GIVE THEM CREDIT
FOR.”

28. THANKS!Any questions?
You can find me at @SimonRStones & simon@simonstones.com
Credit: SlidesCarnival