Only connect: working together to improve research
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Partic...
What happened
Feedback
Public appetite
• 82 per cent of people believe it is
important for the NHS to offer
opportunities to take part in
healthc...
IPSOS MORI Poll for Association of Medical Research Charities, 2011
‘Only 9% of patients wanted more research on
drugs, yet over 80% of randomised controlled
trials in patients with osteoart...
Adding value to research
Five pillar framework being taken forward by NIHR with
patients and the public:
• relevant and im...
Improved patient outcomes
‘
"The Government is committed to the
promotion and conduct of research as a core
NHS role"
NHS in the White Paper, "Equity ...
Public involvement in UK health research
• Core principle of National Institute for Health
Research (NIHR)
• NIHR leadersh...
Public involvement in UK health research
Leadership, evidence, capacity, influence
• Focus on ‘quality’
• Strategic partne...
People making research happen
• Vision will be achieved by patients and the public:
Asking about research
Choosing to ta...
Supporting people to make research
happen
• Choice
• Leadership
• Involvement
• Experience
• Regulators
Makeresearchhappen.com
Local CRNs
CLAHRCs
AHSNs
“In the future the public will be more technically
sophisticated, inquisitive and informed than ever
before.”
Professor Sa...
Thank you
Simon.Denegri@nihr.ac.uk
www.invo.org.uk
Twitter: @Sdenegri
Blog: http://simondenegri.com/
'Working Together in Research' - Leeds - 26th June 2013
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'Working Together in Research' - Leeds - 26th June 2013

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  • Went to PPI leads, on the website and to the patient ambassadors
  • 'Working Together in Research' - Leeds - 26th June 2013

    1. 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
    2. 2. What happened
    3. 3. Feedback
    4. 4. 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
    5. 5. IPSOS MORI Poll for Association of Medical Research Charities, 2011
    6. 6. ‘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
    7. 7. 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
    8. 8. Improved patient outcomes ‘
    9. 9. "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
    10. 10. 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
    11. 11. 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
    12. 12. 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
    13. 13. Supporting people to make research happen • Choice • Leadership • Involvement • Experience • Regulators
    14. 14. Makeresearchhappen.com
    15. 15. Local CRNs CLAHRCs AHSNs
    16. 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. 17. Thank you Simon.Denegri@nihr.ac.uk www.invo.org.uk Twitter: @Sdenegri Blog: http://simondenegri.com/

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