Simon Denegri (INVOLVE chair and NIHR National Director for Public Participation and Engagement in Research) keynote presentation at NIHR CLAHRC East Midlands launch event on 14 February 2014, Loughborough.

1. Public involvement and NIHR CLAHRCs: soul mates or
warring couple?
CLAHRC East Midlands Launch, Loughborough, Valentines Day, 2014
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public
Participation and Engagement in Research (UK)

2. Challenging the consensus

3. Adding value to research
The issue:
‘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
The agenda
- NIHR programme
- Lancet #Research series
http://download.thelancet.com/pdfs/journals/lancet/PIIS0140673613622291.
pdf?id=a02f57d1811fcb77:34c23d79:14370072c4a:512e1389161461812

4. Adding value: research priorities
http://www.netscc.ac.uk/news/item/08042013.asp

5. Effectiveness and efficiency
‘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

6. Accountability and trust
• 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.
Ipsos MORI study for HRA: 2013
http://www.hra.nhs.uk/news/2013/11/22/patientinvolvement-increases-public-confidence-healthresearch/#sthash.x3fCMNWj.dpuf

7. Young people: a success story

8. “In the future the public will be more technically
sophisticated, inquisitive and informed than ever
before.”
Professor Samuel Thier, Harvard University
Speaking at the launch of the UK eHealth Informatics Research
Centres and Network, May 2013

9. Enabling and empowering patients and
carers
• Supporting choice, promoting participation
• Involving patients in research
development, innovation and diffusion
• Using patient insight to improve patient experience
• Developing patient leadership in research
• Building research active communities
• Partnership and collaboration

10. Making the difference in research
• Vision will be achieved by citizens:
Asking about research
Choosing to take part in research
Knowing their contribution has made a difference
Shaping the way in which research is designed and
delivered
Leading change at local and national level to make
research happen
Reporting on and sharing their experiences with
commissioners and providers

11. From willing to active research
citizens
Public appetite
• 82 per cent of people believe it is
important for the NHS to offer
opportunities to take part in
healthcare research.
• Less than 7% said they would
never take part in a clinical
research study.
NIHR Clinical Research Networks
Survey May 2012
• 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
– 1 in 3 patients had a discussion
about research with a health
professional
– > 53% who were not asked, would
like to have been
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

12. From willing to active research
citizens
IPSOS MORI Poll for Association of Medical Research Charities, 2011

13. –
–
–
–
Clear, simple message
Patient-facing
Easy to deliver
Hsopital focus
‘OK to Ask’
campaign:
International
Clinical Trials
Day
2013
• 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

15. EFPIA-PhRMA survey of patient groups 2013

16. NIHR leadership in public involvement
in UK health research
• Core principle of National Institute for Health
Research (NIHR)
• Leadership from the top
• Support including £M investment
• Capacity and capability
• Clear expectation set with NIHR funded researchers
• Models and approaches built on ‘partnership’
• ‘Marriage-maker’ or ‘deal-breaker’

17. NIHR CLAHRC leadership in public
involvement in UK health research

19. ‘Strategic localism’
Academic Health
Science Networks
(AHSNs)
Collaborations
for Leadership in
Applied Health
Research and
Care (CLAHRCs)
Local Clinical Research
Networks

20. The secret of a happy marriage in CLAHRC
PPI….?
• Say ‘I love you’ ten times a week.
• Having three arguments a month adds to the
magic!
• Say ‘sorry.’
• Accept each other’s faults…..
Based on OnePoll Survey, USA, February 2014

21. Thank you
Simon.Denegri@nihr.ac.uk
www.invo.org.uk
Twitter: @SDenegri
Blog: http://simondenegri.com/
involvementlastminute.com