1.
SEVEN YEARS
TO TRANSFORM
SIMON R. STONES
@SimonRStones

2.
1993
2012 - Fibromyalgia
2008 – Crohn’s disease
1996 – Juvenile idiopathic arthritis
and hypermobility syndrome
1951
1983 – Polymyositis, lupus, TB
2018 – Pancreatic cancer
2014 - Nonalcoholic steatohepatitis
2006 – Bilateral hip replacements

3.
WHERE IT ALL BEGAN
A meeting at Liverpool Lime Street station!

4.
4

5.
2012
National Institute for Health Research (NIHR) Clinical Research Network (CRN):
Children/Versus Arthritis Paediatric Rheumatology (PRh) Clinical Studies Group (CSG)
What’s a consumer
representative?
What am I supposed to
do?
National Advisory Group

6.
2013
MobApp Project
How do I ‘represent’
young people with JIA?
How do I get to be as
‘good’ as these other
researchers?
National Research Project

7.
2014
Transitional care for young people with
juvenile-onset rheumatic diseases
I get to go to Zurich!
How am I going to
afford this!?
How much time do I
need to spend
preparing?
International Recommendations

8.
2015
EULAR Young PARE
Which organisation do
I represent?
Is this what care is like
across Europe?
How do I fit in among
these 200 delegates?
International Advisory Group

9.
2016
University of Leeds
Which hat should I
wear?
Why am I here?
PhD

10.
2017-2019 Take offEULAR
ENCA/PReS
EPF
RAiISE
iCAN
FMA UK/ENFA

11.
My involvement in research has
sparked a whole new interest and
passion in my life…
SPARKING
INTERESTS

12.
12

13.
ONE CHANCE DISCUSSION
ONE SINGLE MEETING…

14.
150+ PUBLICATIONS
60 SPEAKER INVITATIONS
69 CONFERENCES
46 STAKEHOLDER/ADVISORY COMMITTEES
32 REVIEWER POSITIONS
29 RESEARCH STUDY POSITIONS
22 INVITED WORKSHOP FACILITATOR ROLES
15 GRANTS AND BURSARIES
8 EDITORIAL POSITIONS
4 MANAGEMENT BOARD POSITIONS
2 GRANT FUNDING PANELS
1 TRANSFORMED LIFE

15.
“
THE POSITIVES
People
Experiences
Opportunities
Bringing about change

16.
“
THE NEGATIVES
Critics
Short sightedness
Institutions
Labels

17.
“1. We make people fit into existing structures. Shouldn’t
it be the opposite way around?
2. It’s time to truly value the voice of people with lived
experience, just like we value the voice of employees.
3. We need to ask ourselves, why are we really doing
this?
4. Don’t judge, or criticise. Let’s nurture and support.
We’re all heading in the same direction, after all…

18.
18
Research has…
Made me a better person
Made me an empowered patient
Helped me to fight to save
my mum’s life

19.
“
We have the chance to
transform lives. I am
living proof of what a
difference it can make.