This is a talk I gave at the Council of Academic Hospitals of Ontario (CAHO) 'Healthier Wealthier, Smarter' conference in Toronto on 1st June 2015. Do visit their new website: http://caho-hospitals.com/

1. The value of engaging patients in research
CAHO Healthier, Wealthier, Smarter: A Health Research Agenda for Patients,
People and Prosperity, Toronto, 1st June 2015
Simon Denegri, NIHR National Director for Patients and the Public
and Chair, INVOLVE

2. NIHR, ‘the research arm of the NHS’
• Vision: ‘to improve the
health and wealth of the
nation through research’
• Mission: ‘ to maintain a
health research system in
which the NHS supports
outstanding individuals,
working in world-class
facilities, conducting
leading-edge research
focused on the needs of
patients and public.’

3. NIHR, patients, carers and the public
• Public ‘involvement:’ core principle of NIHR’s ‘business’
from the beginning
• Increasingly embedded as an ethos across NIHR system
• Clear expectation set with researchers
• Approach built on ‘partnership’ working
• Solid and sustainable funding
• Seen as vital component in pursuing ‘growth agenda’
“I have always taken the view that public involvement in research
should be the rule not the exception.” Professor Dame Sally
Davies, Chief Medical Officer (CMO)

4. What we aspire to:
A dynamic partnership
between the public,
researchers and others, to
advance NHS, public
health and social care
research and improve the
health and well being of
the population
Established in 1996
INVOLVE is a national
advisory group funded by,
and part of, the NIHR
http://www.invo.org.uk/
How we do it?
• Leadership across NIHR
• Build and share the
evidence base
• Develop capacity and
capability
• Influence policy and
practice

5. Going the extra mile with patients and the public
in research #ppitogether
Vision, mission, principles
• Vison A population actively involved
in research to improve health and
wellbeing for themselves, their family
and neighbours
• Mission The public as partners in
everything we do, delivering high
quality research that makes a
difference to people’s lives
• Principles
Recognising people and their
experiences as assets; building on
their existing capabilities; promoting
mutuality and reciprocity;
developing peer support networks;
breaking down barriers between
professionals and the public; being
facilitative
Common goals
 Opportunities to be involved in
research are visible and seized on
by the public.
 It is standard practice for the public
and professionals to work together
 The experience of patients, service
users and carers is valued
 Public involvement is a required
part of high quality research
 Evidence of what works is easily
available and can be put into
practice.
 The NIHR has maintained its global
presence and influence for working
with the public

6. The UK public and research in numbers
691 NIHR reviewers
> 600,000 research participants in 2013/14
1.4 million INVOLVE website visitors in
2014/15
89% of people willing to take part
in research
3% of people would not take part in a clinical trial
http://www.nihr.ac.uk/documents/about-NIHR/NIHR-Publications/NIHR%20Christmas%20xmas%20stats%202014.pdf

7. The value of working with the public in
research

8. Why do people get involved?
• Personal need or benefit
• To have a say – ‘voice’
• Wanting to make a difference
• To change how care is given
• Altruism
• Frustration
• Personal development
• Control…….

9. Stop ticking the box…..…

10. Adding value to research
‘Only 9% of patients wanted
more research on drugs, yet
over 80% of randomised
controlled trials in patients
with osteoarthritis of the
knee were drug
evaluations.’
‘Relations between the agendas of the research
community and the research consumer’ Tallon et
al, Lancet 2000 as cited by
Iain Chalmers and Paul Glasziou, The Lancet,
2009

11. Relevance: research priorities
http://www.netscc.ac.uk/news/item/08042013.asp

12. Refinement: research efficiency and
effectiveness
‘The aim of patient and public involvement
is to improve the quality, feasibility and translational value
of research...[This] is the first time
we can see that patient involvement is linked to higher
likelihood of reaching recruitment target – and as a result,
study success.’
Professor Til Wykes, Director, MHRN
‘Patient involvement in research boosts success,’
The Guardian, 16/09/13
Paper reference: Ennis, L. et al. ‘Impact of patient involvement
in mental health research: longitudinal study’ British Journal of Psychiatry
(Sept 2013) doi: 10.1192/bjp.bp.112.119818
Design

13. Reach: seldom heard groups, and
young people
http://www.clahrc-em.nihr.ac.uk/clahrc-em-
nihr/east-midlands-centre-for-black-and-
minority-ethnic-health.aspx

14. Partners in innovation
“I don’t actually think of the
patients who work with us as PPI
members: they’re colleagues,
they’re people with good ideas.
To me, they’re part of the team
like the statistician or the
qualitative researcher or the
clinician.”
Professor Hywel Williams, Professor of
Dermato-Epidemiology and Director,
Centre of Evidence-Based Dermatology,
University of Nottingham
Senior Investigators, Leaders for patient
and public involvement in research,
INVOLVE 2014

15. Working with the health system to
improve participation and engagement

16. Cometh the hour, cometh the patient
‘We stand on the cusp of a revolution in the role that
patients – and also communities – will play in their
own health and care. Harnessing what I’ve called this
renewable energy is potentially the make-it or break-it
difference between the NHS being sustainable – or not.’
Simon Stevens, NHS CEO, NHS Confederation Annual
Conference, June 2014

17. NIHR Strategic Plan for Participation and
Engagement launched on 20 May 2014
• Better outcomes for all in health and care
• People choosing to take part in research
• People defining research of the highest
quality
• People understanding the evidence on which
their care is based
• Improving people’s experience in research
‘Promoting a research active nation’

18. Public appetite
• 82 per cent of people believe it is
important for the NHS to offer
opportunities to take part in
healthcare research.
• 89% of people would be willing to
take part in a clinical research study.
NIHR Clinical Research Networks
Survey Oct 2014
• Over 70% of patients look for
information about clinical trials
ecancer 5 235 2011 ‘Information
needs of cancer patients’
Patient experience
• National Cancer Patient Experience
Survey 2012/2013/2014
– 1 in 3 patients had a discussion
about research with a health
professional
• Discussion much less likely if
happening at all for patients with
other conditions (i.e. 1 in 5 for type
1 diabetes)
• 91% of Trusts do not provide
information to support patient
choice in research: NIHR CRN CC
Mystery Shopper 2013
Every willing patient a research patient

19. Making research part of the care
pathway

20. Five key features of the ‘research’
hospital for patients
• Research is visible to the naked eye
• People can choose how to contribute
• Their experience is valued as part of research
excellence
• They see research as a mark of quality in their
hospital
• They get to see the results

21. The research hospital
http://simondenegri.com/2013/11/04/rbandh-guest-blog-promoting-clinical-
research-locally-from-ok-to-ask-to-research-changed-my-life/

22. ‘OK to Ask’
campaign:
Intl Clinical
Trials Day
2015
Patient stories
• Encouraging patients and
carers to ask their clinician
about clinical research (and
log response/suggestions)
• Encouraging clinicians to
consider their response if a
patient does ask: how to
channel interest

23. Patient research ambassadors

24. Better routes to participation

25. Improving the patient experience
Improving patient experience:
• Removing barriers
• Information and consent
• Quality of care
• Relationship with professionals
• When the trial is over – results
and acknowledgement?

26. …to improve the regulatory environment
HRA Public Dialogue Exercises
• 77% of people said that knowing a
Research Ethics Committee had
reviewed a study would increase their
confidence in it.
• 44% of respondents thought that
involving patients….would increase
their confidence in the study.
• HRA and MHRA now have public
involvement strategies and structures
in place
Ipsos MORI study for HRA: 2013
http://www.hra.nhs.uk/news/2013/11/22/pa
tient-involvement-increases-public-
confidence-health-
research/#sthash.x3fCMNWj.dpuf

27. The future of public engagement in
research

28. Future challenges in engagement
• Public engagement in
implementation and
diffusion
• Use of patient data
• Harnessing new and
social media
• Focus v frenzy
“In the future the public
will be more technically
sophisticated, inquisitive
and informed than ever
before.”
Prof. Samuel Their, Harvard University
May 2013, Launch of the UK eHealth
Informatics Research Centres and Network

29. Questions
Simon.Denegri@nihr.ac.uk
Twitter: @SDenegri
Blog: http://simondenegri.com/
involvementlastminute.com