This seminar was delivered as part of the University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series.

1. IN THE driving SEAT: HEALTH
CARE AND RESEARCH LED FOR
AND BY YOUNG PEOPLE
Part of the “What does it mean to listen to children and young people” seminar series

2. Hello!
I AM SIMON STONES
Award-winning patient leader.
Patient and carer advocate.
Expert by experience.
Freelance consultant.
Charity representative.
Qualitative researcher.
You can find me at:
@SimonRStones

3. Your task
YOUR ELEVATOR PITCH
For once, you’re not applying for
grant funding… you’re seeking the
buy in from a group of young people!
Use the post-in note to
summarise one of your current
pieces of research – you’ll have
30 seconds to win them over!

4. TELL ME AND I forget
TEACH ME AND I remember
INVOLVE ME AND I learn

5. A LITTLE BIT ABOUT ME
My journey with ill health

6. 1996
Diagnosed with
juvenile idiopathic
arthritis aged 3
2008
Diagnosed with
Crohn’s disease
aged 14
2012
Diagnosed with
fibromyalgia
aged 18

7. The basics
Let’s revisit the
fundamentals of patient
and public involvement
and engagement in
research

8. 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.

9. THINK research AT EVERY OPPORTUNITY
• Where people are actively involved in
research projects and in research
organisations.Involvement
• Where information and
knowledge about research
is provided and
disseminated to people,
for example, a science fair
or hospital open day.
Engagement
• When people
take part in a
research study
(formally
referred to as
‘subjects’).
Participation

10. THINK involvement AT EVERY OPPORTUNITY
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 – young people and their families are
an important part of your team

11. REMEMBER TO individualise OPPORTUNITIES
Diagnosis
Denial
Anger and
frustration
Adapting
Acceptance
Living
life to
the full

12. RESEARCH CAN empower YOUNG PEOPLE TO TAKE CONTROL
To learn about our conditions
To differentiate between
evidence-informed and anecdotal guidance
To develop skills and techniques
To find support from peers
To grow in confidence

13. IT’S MORE THAN JUST A nice THING TO DO
The quality and relevance of research can be
improved
Information can be made more appropriate and
accessible
Methods can be tailored so that they are acceptable
and sensitive to participants’ needs
Participation can be increased
Identification of relevant research questions
Young people and families can be empowered

14. A COMMON EXERCISE THAT young people ARE FAMILIAR WITH

15. Your next task
TALK THE TALK, WALK THE WALK
Research is filled with so much
jargon… more than many of us
realise!
Complete the activity and see
whether you can explain each
term in plain English, for young
people!

16. DRAFT STANDARDS FOR PATIENT AND PUBLIC INVOLVEMENT
1. Inclusive opportunities - We provide clear, meaningful and
accessible opportunities for involvement, for a wide range of
people across all research.
2. Working together – We create and sustain respectful
relationships, policies, practices and environments for effective
working in research.
3. Support and learning - We ensure public involvement is
undertaken with confidence and competence by everyone.
4. Communications - We provide clear and regular
communications as part of all involvement plans and activities
5. Impact - We report and act on the impact of involving the public
in research.
6. Governance - We ensure the community of interest voices are
heard, valued, and included in decision making.
www.invo.org.uk

17. Young people
living with
health
conditions and
their families
Patient
organisations
and charities
Health and
education
professionals,
researchers,
industry and
government
CLOSER COLLABOARATION BETWEEN ALL stakeholders IS NECESSARY
Ensuring
scientific and
technical
excellence
Ensuring relevance Accountability
Understanding of the real issues

18. How can we involve
young people in research?

19. APPROACHES SHOULD BE bespoke
Existing groups
There are lots of existing young
person advisory groups which
you can contact to support
your work.
Social media
Social media is an invaluable
tool for connecting with young
people and their families.
Advisory groups
Establishing new advisory
groups for specific projects or
initiatives is a good idea if you
want to establish a group you
can contact more frequently.
Ad-hoc focus
groups
Ad-hoc focus groups work well
for prioritising and designing
research for grant applications,
especially when budgets are
limited.
Consultancy
Meet with patient opinion
leaders and charitable
organisations to help them
advise and shape your work.
Co-researcher
partnerships
The gold standard is when
young people and their families
become co-researchers: true
research partners with you.

20. LET’S HAVE A LOOK AT WHAT’S ALREADY OUT THERE

21. www.raiise.co.uk
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.

22. Five groups of young people across the UK
working with researchers on a variety of different
projects.
“We contribute to future research…”
“We make new friends and build confidence”
“We extend our knowledge and skills”
“We have a voice and make a difference…”
A new group, based in Liverpool, of parents and
carers with different experiences, to support
researchers on different projects.
Birmingham Bristol Liverpool
London Nottingham

23. VOICE UP
Facilitated by the Public Programmes team at the
Clinical Research Facility (based in Manchester
University Hospitals NHS Foundation Trust), this new
young people’s advisory group will enable young
people to shape research across Greater Manchester.

24. www.icanresearch.org
iCAN advocates for children in healthcare globally,
especially those involved in healthcare research
Advocacy
iCAN aims to to provide a platform for children
and their families to have a voice in research
An expanding network of 19 chapters across the
globe, which continues to grow!
Global
impact
Research
eYPAGnet (Europe)
Generation R (England)
KIDS Albania
KIDS Barcelona
KIDS Bari
KIDS Central Ohio
KIDS Chicago
KIDS Connecticut
KIDS France
KIDS Georgia
KIDS Houston
KIDS Kansas City
KIDS Michigan
KIDS Sydney
KIDS Utah
KidsCan (Vancouver)
ScotCRN (Scotland)

26. www.savvy.coop
Organisations have questions. Patients have answers!
The MATCH.COM® of patient insights

27. www.wegohealth.com
Thousands of patient leaders -
advocates, influencers and experts -
helping others and transforming
healthcare

28. HOW SOME ORGANISATIONS embed YOUNG PEOPLE IN THE GRANT PROCESS
Triage/outline
review
Peer review
Applicant rebuttal
Application deadline Funding announcement
Panel review
Research and patient insight at every step in the process…

29. THE TRECA project
The NIHR-funded TRECA study has
developed multimedia information
(MMI) resources with text,
animations, videos and diagrams to
inform children, young people and
parents about research.
Place your screenshot here

30. THE SIRJIA project
Young people and families were
involved in identifying the primary
outcome measure for the study, as well
as the inclusion/exclusion criteria, and
methods of data collection.
OPPORTUNITY FOR
YOUNG PEOPLE WITH JIA!

31. THE iSMART project
My involvement in research as a young
person has inspired me to undertake
some research for my doctorate, giving
young people with arthritis the power to
shape the support they want and need…
Place your screenshot here

32. KEY INGREDIENTS FOR including YOUNG PEOPLE IN HEALTH RESEARCH
Make young people feel valued
Enable young people to connect with you
Communicate with, not at young people
Keep the momentum going
Think about the practical side of things
Make sure you listen and act
Share feedback in a constructive and regular manner
Always be flexible
Have a little common sense too!

33. Give young people a
greater voice. They
are much wiser than
we give them credit
for.

34. thanks!
ANY QUESTIONS?
Feel free to get in touch!
@SimonRStones
simon@simonstones.com
www.simonstones.com