building ‘research active’...
TRANSCRIPT
Building ‘research active’ communities
NIHR SPHR, 8th October 2013
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation
and Engagement in Research (UK)
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’
What it means in practice: from setting
priorities to research design and delivery
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.
Priority setting
Design
Engagement Delivery
What it means in practice…..
Public involvement gets results
‘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
Public involvement gets results
From willing to active research citizens
Best research, with the public, for best health
• Supporting patient and public choice by providing the right information and tools
• ‘iResearch strategy’ supporting new media use by patients and the public
• Patient and public leadership supporting research in different contexts
• Patient and public involvement that delivers quality research and efficient delivery
• Using patient and public insight and experience to improve what we do
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’
Public experience • National Cancer Patient
Experience Survey 2013 – 1 in 3 patients had a
discussion about research with a health professional
– > 85% saw information about research in their hospital
• Falling participation rates in epidemiological studies
• Engagement and participation not the norm
Public attitudes to research participation
IPSOS MORI Poll for Association of Medical Research Charities, 2011
Campaign Feedback
Social media
Public involvement in public health research…
BMC Medical Research Methodology 2013, 13:56 doi:10.1186/1471-2288-13-56 Published: 11 April 2013
• Strategy
• Leadership
• Partnerships
• Pragmatism
• Support
