Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014

1. Public involvement in UK health research: why, how
and where next?
Canadian Institutes for Health Research (CIHR), Ottawa, Canada, Simon
Denegri, January 2014
Chair, INVOLVE; NIHR National Director for Public Participation and
Engagement in Research (UK)

2. 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

3. Public involvement in health research:
why?
• Accountability – ‘protect and promote
the public interest’
• Improve the quality of what we do
• Ensure value and efficiency
• knowledge creation
• Advocate change

4. A working definition of public
involvement
INVOLVE defines public involvement in research as
research being carried out ‘with’ or ‘by’ members of
the public rather than ‘to’, ‘about’ or ‘for’ them.
This includes, for example, working with research
funders to prioritise research, offering advice as
members of a project steering group, commenting on
and developing research materials, undertaking
interviews with research participants.

5. NIHR leadership in public involvement
in UK health research
• Core principle of National Institute for Health
Research (NIHR)
• Leadership from the top
• A solid platform on which to build
• Clear expectation set with NIHR funded researchers
• Models and approaches built on ‘partnership’
• Support including £M investment

6. What is INVOLVE?
What we aspire to:
How we do it?
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 National Institute for Health
Research. http://www.invo.org.uk/
Leadership across NIHR
Build and share the evidence base
Develop capacity and capability
Influence policy and practice

7. Developing capacity and capability
INVOLVE resources to support public involvement in 2012/3:
• ‘invoDIRECT,’ an online directory of networks, groups and organisations
that support active involvement in research
• An ‘Involvement Cost Calculator’ to help people budget for the costs of
public involvement
• Published case studies that contribute to the evidence base on the impact
of public involvement
• A joint webinar series with the NIHR School for Social Care Research on
public involvement in social care research
“Some researchers are concerned that while research organisations are
making involvement a requirement for funding or support, not all researchers
know how to do it well…..”
Kristina Stanley, TwoCanAssociates Report for Mental Health Research
Network (MHRN), March 2012:
http://www.mhrn.info/data/files/MHRN_PUBLICATIONS/REPORTS/ServiceUse
rInvolvementEvaluationShort.pdf

8. Adding value: setting research
priorities
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
Changing practice
- NIHR programme
- Lancet #Research series
http://download.thelancet.com/pdfs/journals/lancet/PIIS0140673613622291.
pdf?id=a02f57d1811fcb77:34c23d79:14370072c4a:512e1389161461812

9. Setting research priorities
http://www.netscc.ac.uk/news/item/08042013.asp

10. Ensuring value 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

11. ‘Protect and promote the public
interest’

12. An opportunity for shared regulation?
• 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/patient-involvement-increases-publicconfidence-health-research/#sthash.x3fCMNWj.dpuf

13. The policy context
•
•
•
•
•
Life Sciences Strategy
Health and Social Care Act 2012
NHS Choice Framework
NHS Constitution; use of medical records in research
Re-organisation around local geographies: CCGs,
Healthwatch, Local Clinical Research Networks (LCRNs),
Academic Health Science Networks (AHSNs)
‘Patient experience is the most important concern for the NHS
Commissioning Board’
Sir Malcolm Grant , Chair, NHS Commissioning Board

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

16. ‘Convergence!?*!’

17. ‘Research active’ communities

20. ‘Every patient to be a research patient’
Rt. Hon David Cameron MP, UK Prime Minister, 5th December
2011, Launch of Government Life Sciences Strategy

21. Best research, with citizens, for best
health
• Supporting patient choice by providing the right
information and tools
• Digital strategy supporting new media use by
patients and the public
• Patient leadership supporting research in different
contexts
• Patient and public involvement that delivers quality
research and efficient delivery
• Using patient insight and experience to improve
what we do

22. Citizens making research happen
• 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

23. 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

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

25. From willing to active….
• More than one third of people do not feel well-informed
about clinical research
• Less than 20% of people would feel confident about asking
their doctor or medical specialist about taking part in a
research study
NIHR Clinical Research Networks (CRN) Survey, June 2013
http://www.crncc.nihr.ac.uk/

26. –
–
–
–
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

28. Research champions in care
settings

29. “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

31. UKCTG Public Feedback
•
•
•
•
•
•
•
•
Only 28% had taken part in a clinical trial
38% knew little or nothing about clinical trials and would like a clear and reliable
source of information to learn more;
64% would like to find out about trials recruiting in their local area
66% found UKCTG ‘easy’ or ‘very easy’ to find their way around
67% found the information provided on the site ‘very clear’ or ‘fairly clear’
72% said that UKCTG should help them make direct contact with a clinical trial
without going through their doctor
88% said the site should provide relevant links to patient groups, medical
researchers and funders relevant to a clinical trial
88% would recommend the site to others.

32. Young people: a success story

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