This talk, about patient and public involvement in research, was delivered at the inaugural co-developed conference at University College Dublin, titled 'A collaborative approach to arthritis and rheumatic disease research'.

1. Patient and public
involvement in
research: Two sides
of the same coin
Simon Stones
Patient Advocate, Consultant and Researcher
@SimonRStones

2. 2

3. 1
Peeling back
the layers
3

4. What is
patient and
public
involvement?
When patients, carers and
members of the public are
active partners in research,
rather than the ‘subjects’ or
participants of research.
4

5. What is
patient and
public
involvement?
It is about doing research
with or by patients, carers
and the public, not doing
research to patients, carers
and the public.
5

6. 6
Involvement
Engagement
Participation
“You can’t have one
without the other…”

7. 7
Throughout
the research
cycle

8. 8
In different
types of
research
Research in the
laboratory
Finding out what
needs to be researched
Testing new
treatmentsUnderstanding
experiences
Understanding
behaviours

9. You can talk
the talk… but
can you walk
the walk?
9

10. Wearing
lots of
hats…
and
spinning
lots of
plates!
Simon
the
son/carer
the
patient
10
the
patient
advocate
the
charity
trustee
the
researcher

11. 2
From the
patient’s side
11

12. 12
3rd and 4th December 2012
Consumer Representative
CSG ARUK
MCRN
SHARE
Stratified Medicines
Formulations
SYCAMORE
MYPAN
PPI

13. What have
I done!?
13

14. What do I
bring to the
table?
14
My expertise and experience
My challenges and needs
My thoughts and ideas
My network

15. What I don’t
bring to the
table…
15
Your skills and experiences
Your needs and priorities
Your ‘tick’ in the box
The views of ‘all patients’

16. What impact
do I have on
research?
16
Improving research quality and relevance
Making information accessible
Making research acceptable and sensitive
Improving recruitment to research studies
Dispelling myths about research
Making research more relevant

17. What impact
can research
have on me?
Knowledge about my health
Skills to interpret evidence
Learning new techniques
Meeting incredible people
Improving self-confidence

18. The
TRECA
study
TRials
Engagement
in Children
and
Adolescents
18

19. Place your screenshot here
International
social media
use study
Among people
with rheumatic
diseases
19

20. 3
From the
researcher’s
side
20

21. “
21
I’m not telling you it’s
going to be easy.
I’m telling you it’s
going to be worth it.”

22. Place your screenshot here
My PhD
study
Working with
young people,
families,
healthcare
professionals
and charities
22

23. 23
Institutional
cultures
Attitudes of
funders
Capacity and
capability

24. 24
Ethics
Red tape /
policies
Representation

25. 25
FINANCIAL
PAYMENT AND
EXPENSES
RECOGNITION AND
APPRECIATION
LOGISTICS (DAY,
TIME, LENGTH OF
MEETING)
CONSENT AND
ASSENT METHODS SAFEGUARDING

26. 26
1. Patient and public involvement is no longer just
a ‘nice thing to do’.
2. Research is everyone’s business.
3. Patients, carers and members of the public must
be equal partners of research teams.
4. Start early, think about every possibility, review,
reflect and talk to each other.
5. Build relationships upon shared values of trust,
honesty and respect.

27. 27
IMPOSSIBLE

28. “
28
Just a big word… thrown
around by those who find it
easier to live in the world
they’ve been given, than to
explore the power they have
to change it.”

29. Thank you!
Any questions?
You can find me at
@SimonRStones &
simon@simonstones.com
29

30. Useful
links
30
European League Against Rheumatism
https://www.eular.org
European Network for Children with Arthritis
https://www.enca.org
International Foundation for Autoimmune
and Autoinflammatory Arthritis (IFAA)
https://www.aiarthritis.org
National Institute for Health Research (NIHR)
https://www.nihr.ac.uk/patients-and-public/
http://www.invo.org.uk
Research Involvement and Engagement
https://researchinvolvement.biomedcentral.com
Versus Arthritis
https://www.versusarthritis.org