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'Working Together in Research' - Leeds - 26th June 2013
1. Only connect: working together to improve research
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation
and Engagement in Research
Leeds, June 2013
5. 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
6. IPSOS MORI Poll for Association of Medical Research Charities, 2011
7. ‘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
8. Adding value to research
Five pillar framework being taken forward by NIHR with
patients and the public:
• relevant and important research questions
• appropriate methodology
• timely and efficient delivery
• fully accessible publication of findings
• useable and useful outputs
10. "The Government is committed to the
promotion and conduct of research as a core
NHS role"
NHS in the White Paper, "Equity and excellence: Liberating the NHS,” 2010
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
12. Public involvement in UK health research
Leadership, evidence, capacity, influence
• Focus on ‘quality’
• Strategic partnerships and collaboration
• Principles and standards
• Governance and accountability
• Removing practical barriers
13. People making research happen
• Vision will be achieved by patients and the public:
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
14. Supporting people to make research
happen
• Choice
• Leadership
• Involvement
• Experience
• Regulators
17. “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
