In this presentation, delivered to the Translate external advisory board at their bi-annual meeting, the importance of patient and public involvement in research is highlighted, as well as simple strategies that researchers, healthcare professionals and private organisations can take to involve people in all aspects of research, from the bench to the bedside.

1. Co-design, Co-produce, Co-deliver:
Collaboration is the only viable path
to success
Simon R. Stones
Patient Leader and Doctoral Researcher in Child and Family Health
School of Healthcare, University of Leeds
Translate Advisory Board Meeting
@SimonRStones

2. 2
I wake up tired
I stay up tired
I go to bed tired
I wake up with hope
I stay up with hope
I go to bed with hope
I wake up in pain
I stay up in pain
I go to bed in pain

3. 3
1996
1999
2004
2006
2008
2012 2016
Diagnosed with
juvenile
idiopathic arthritis
(JIA) aged 3
Commenced disease
modifying treatment
(Methotrexate) Commenced
biological
therapy
(Etanercept)
Onset of Crohn’s disease
Diagnosed
with Crohn’s
disease aged
14
Diagnosed with
fibromyalgia
Started postgraduate
research (PhD)
2012
Became involved
in research
2012
Started undergraduate
degree
2016
Graduated
A journey of 21 years…

4. 4
What is patient and public involvement?
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.

5. 5
• Where patients, carers/family members
and members of the general public
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.
Engagement
• When people take
part in a research
study (formally
referred to as
‘subjects’).
Participation

6. 6
Patient and public involvement in research is no
longer a ‘nice thing to have’
The NIHR expects patient and public
involvement to be embedded throughout all
research proposals
It is increasingly being recognised as
important by other major funders and in
some cases is a requirement
The NHS Health Research Authority will ask
how you will involve patients and the public
in your research
A budget for patient and public involvement
must be costed and should be ring-fenced

7. 7
Exemplar model of how patient and public
involvement can be scaled up
Voluntary sector
/ NGOs
Patient
research
partners
Research
community
Ensuring scientific and
technical excellence
• Challenging researchers to address the real issues facing patients and carers
• Improved understanding of proposals through technical insight
Ensuring relevance

8. 8
The best research will involve patients and the
public at every stage of the journey
Set
research
priorities
Delivering
training to
researchers
Review
funding
applications
Facilitate
participation
Monitor
and advise
Evaluate
and
disseminate
outcomes
Patients,
carers
and the
public
Developing an
idea/ research
question
Developing a
research
application
Carrying out
research
Dissemination &
implementation

9. 9
How do you involve patients and the public in
research?
One-to-one
discussions
Focus groups and
discussion groups
Advisory and
reference
groups
Management
teams
Co-researchers /
research partners
• University Research User Groups
• Consortium Stakeholder Groups
• NIHR GenerationR
• NIHR Patient Research Ambassadors
• eYPAGnet
• Children’s Advisory Network (iCAN)
• INVOLVE
• NIHR CRN Clinical Studies Groups
• Join Dementia Research (JDR)
• Patient organisations / charities
Through existing
groups
Social media and
platforms such as
People in
Research

10. @SimonRStones
@SimonRStones
www.simonstones.com
simon@simonstones.com