1. Breaking barriers, embracing expertise:
When patients become people in research
6th Children’s Research Network for Ireland and Northern Ireland Conference

2. Hello!
I am Simon Stones
Patient leader.
Advocate for others.
Expert by experience.
Charity representative.
Researcher in training.
@SimonRStones

3. Research is the best,
and most underused
treatment, that exists
in society.
“

5. THE BASICS
What is patient and public
involvement in research?

6. “
When patients, carers and members of
the public are active partners in
research, rather than the ‘subjects’ or
participants of research.
It is about doing research with or by
patients, carers and the public, not
doing research to patients, carers and
the public.

7. Participation, engagement and involvement
in research must be individualised
◇ Young people are on a journey.
◇ Families are also on a journey.
◇ Thoughts, emotions and experiences change along that journey.
Coming to
terms with
condition(s)Denial
Anger and
frustration
AcceptanceAdapting
Living
life to
the full

8. 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.
Life, health and wellbeing
extends beyond the hospital
www.raiise.co.uk
Founded by Sophie Ainsworth
Association of Colleges’ Young Student of the Year 2017

9. Research empowers me,
and others, to take control,
To learn about our conditions
To learn about guidelines
To develop skills and techniques
To find support from peers
To grow in confidence

10. Young people
and their
families
There needs to be
closer collaboration
Patient
organisations
and charities
Health and
education
professionals,
researchers,
industry and
government
Ensuring
scientific and
technical
excellence
Improved understanding of proposals through technical insight
Ensuring relevance
Accountability
Understanding of the real issues
facing patients and carers

11. ◇There are at least 793 children waiting to see
a consultant rheumatologist in Ireland.
◇The national average wait time in 2016 was
169 days.
◇226 children have been on the outpatient
waiting list for more than 18 months.
◇iCAN is a parent-run network providing
support, information and advocating for best
care for those affected by juvenile arthritis.
Organisations are working with young
people and families, day in, day out
Ireland is lacking in care and treatment for children who suffer from arthritis, with
care rated as the 2nd worst in Europe.
www.icanireland.ie

12. Think research at
every opportunity
• 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

13. When should we involve
young people in research?
Developing ideas
and prioritising
research questions
Designing
research,
applying for
funding and
ethics
Conducting,
analysing and
disseminating
research
Providing and receiving training and development opportunities

14. How can we involve young
people in research?
One-to-one
discussions
Focus groups and
discussion groups
Co-researchers /
research partners
Social media
Advisory and
reference groups
Through existing
groups

15. How can we involve young
people in research?
◇University Research User Groups
◇Research Consortium Stakeholder Groups e.g. IMI
◇NIHR GenerationR and Patient Research Ambassadors (UK)
◇European Young People’s Advisory Group Network (eYPAGnet)
◇International Children’s Advisory Network (iCAN)
◇INVOLVE and People in Research (UK)
◇Children’s Research Network
◇Patient organisations and charities

16. Young people influencing the way
that research is conducted

17. Patient research
ambassadors:
Families working locally,
nationally, and
internationally to
promote research.

18. The TRECA study: Trials engagement
in children and adolescents
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.

19. The SIRJIA study: Steroid induction
regimens in juvenile idiopathic arthritis
SIRJIA will determine whether
a future study comparing
different steroid treatments is
possible to do with young
people living with juvenile
idiopathic arthritis (JIA).
Young people were involved
in identifying the primary
outcome measure for the
study.

20. Give young
people a chance.
They may just
surprise you.
“
Credits: SlidesCarnival