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HSRN workshop simon denegri - 18th June 2013

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

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

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  • 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/

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