Breakfast workshop at the Health Services Research Network (HSRN) Conference in Nottingham: 18 June 2013

1. Why public involvement is the best meal of the day?

2. “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

3. 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.

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
A national advisory group established
in 1996 and funded by, and part
of, the National Institute for Health
Research (NIHR)
www.invo.org.uk
INVOLVE: a platform for change
How we do it?
• Leadership across NIHR
• Building and sharing the
evidence base
• Developing capacity and
capability
• Influencing policy and practice

5. Cereals

6. Cooked breakfast

7. Citizen driven health and wealth
0
1
2
3
4
5
6
7
2012 2014 2015
Growth

8. Patient access to NHS research
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
• 91% of Trusts do not provide
information to support patient
choice in research: NIHR CRN CC
Mystery Shopper 2013

9. Public support for participating in medical
research
IPSOS MORI Poll for Association of Medical Research Charities, 2011

10. Continental breakfast

11. Public involvement in UK health research
• Core principle of National Institute for Health
Research (NIHR)
• NIHR leadership based on evidence of public
involvement driving research quality
• NIHR funding for national advisory group – INVOLVE -
has given agenda strong platform
• Success built on ‘partnership’ working
• Clear expectation set with research community
• A ‘deal-breaker’ and ‘marriage maker’

12. Strategic leadership across funders
‘Public involvement in research applications to NRES,’
INVOLVE/NRES Report 2011

13. Working brunch

14. Examples of public involvement
• as joint grant holders or co-applicants on a research
project
• involvement in identifying research priorities
• as members of a project advisory or steering group
• commenting and developing patient information
leaflets or other research materials
• undertaking interviews with research participants
• user and/or carer researchers carrying out the
research.

15. The future looks like….
Leadership, evidence, capacity, influence
• Focus on ‘quality’
• Strategic co-ordination
• Principles and standards
• Governance and accountability
• Collaboration and partnership in key areas

16. “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

17. Thank you
Simon.Denegri@nihr.ac.uk
www.invo.org.uk
Twitter: @Sdenegri
Blog: http://simondenegri.com/