This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.

1. Tell me and I forget, teach me and I
remember, involve me and I learn
School of Health and Life Sciences, Glasgow Caledonian University Seminar
Patient and public involvement (PPI) in research: A moral imperative

2. Hello!
I am Simon Stones
Award-winning patient leader.
Advocate for others.
Expert by experience.
Freelance consultant.
Charity representative.
Qualitative researcher.
@SimonRStones

3. Research is the best,
and most underused
treatment in our
country
“

4. 1996
Diagnosed with
juvenile idiopathic
arthritis aged 3
2008
Diagnosed with
Crohn’s disease
aged 14
2012
Diagnosed with
fibromyalgia
aged 18
2012-2016
BSc (Hons) Biomedical Sciences
2016-2019
PhD Applied Health

5. TAKING IT BACK A STEP
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. 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 open day.
Engagement
• When people take part in
a research study
(formally referred to as
‘subjects’).
Participation

8. Participation, engagement and involvement
in research must be individualised
◇ Patients 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

9. Research empowers me,
and others, 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

10. Why is PPI important, and
not 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
Patients and carers can be empowered

11. Patients
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

12. ◇Fibromyalgia Action UK, based in Paisley, is the
national patient organisation for people with
fibromyalgia;
◇Around 160 local support groups across the
England, Northern Ireland, Scotland and Wales;
◇Seek support from the charity to advise on
your study, and to facilitate recruitment;
◇Over 11,100 followers on Twitter;
◇Over 12,900 followers on Facebook;
◇Over 36,000 followers on HealthUnlocked.
Organisations are working with
patients, day in, day out
In the UK, between 1.2 and 2.8 million people are believed to have fibromyalgia, based
on estimated that between 2% and 4.5% of the population have the condition.
www.fmauk.org

13. Shared learning group on
involvement
This group aims to encourage shared learning about patient and/or carer involvement
between national medical research sector organisations in the UK

14. When should we involve
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

15. How can we involve
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

16. How can we involve
people in research?
◇University / NHS-based Research User Groups
◇Clinical Network Patient Focus and Public Involvement Groups
e.g. NHS Greater Glasgow and Clyde
◇Research Consortium Stakeholder Groups e.g. IMI
◇NIHR GenerationR and Patient Research Ambassadors
◇European Young People’s Advisory Group Network (eYPAGnet)
◇International Children’s Advisory Network (iCAN)
◇INVOLVE and People in Research (UK)
◇Patient organisations and charities

17. Application
deadline
Triage/Outline
review
Peer review
Applicant
rebuttal
Panel review
The review and evaluation of
grant applications
Patient Insight
Research Insight

18. “
Never use a long word
when a short one will
do… and don’t use
jargon for the sake of it!

19. Some examples…
• Elucidate = find out
• Analgesics = painkillers
• Novel therapeutics = new treatments
• Molecules XYZ, ABC and EFG = a number of molecules
• Mechanical loading = the way weight is placed on a joint
• SNPs = naturally occurring genetic differences
• Cultured in vitro = grown in the laboratory

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

21. 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
Founder and CEO: Sophie Ainsworth
Association of Colleges’ Young Student of the Year 2017

22. 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.

23. 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 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.

24. Patients won’t be
part of the
conversation in the
future…
they’ll be leading it.
“
Credits: SlidesCarnival

25. “
A task for you Tweeters…
Describe one thing that you’re going to do
differently after today’s seminar with
regards to involving patients and the public
in research.
Tag @SimonRStones and @GCUSHLS

26. Thanks!
Feel free to get in touch…
simon@simonstones.com
www.simonstones.com
07761 058920
@SimonRStones