Published on February 24, 2014
Public involvement and NIHR CLAHRCs: soul mates or warring couple? CLAHRC East Midlands Launch, Loughborough, Valentines Day, 2014 Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research (UK)
Challenging the consensus
Adding value to research The issue: ‘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 The agenda - NIHR programme - Lancet #Research series http://download.thelancet.com/pdfs/journals/lancet/PIIS0140673613622291. pdf?id=a02f57d1811fcb77:34c23d79:14370072c4a:512e1389161461812
Adding value: research priorities http://www.netscc.ac.uk/news/item/08042013.asp
Effectiveness and efficiency ‘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 Design
Accountability and trust • 77% of people said that knowing a Research Ethics Committee had reviewed a study would increase their confidence in it. • 44% of respondents thought that involving patients….would increase their confidence in the study. Ipsos MORI study for HRA: 2013 http://www.hra.nhs.uk/news/2013/11/22/patientinvolvement-increases-public-confidence-healthresearch/#sthash.x3fCMNWj.dpuf
Young people: a success story
“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
Enabling and empowering patients and carers • Supporting choice, promoting participation • Involving patients in research development, innovation and diffusion • Using patient insight to improve patient experience • Developing patient leadership in research • Building research active communities • Partnership and collaboration
Making the difference in research • Vision will be achieved by citizens: 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
From willing to active research citizens 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
From willing to active research citizens IPSOS MORI Poll for Association of Medical Research Charities, 2011
– – – – Clear, simple message Patient-facing Easy to deliver Hsopital focus ‘OK to Ask’ campaign: International Clinical Trials Day 2013 • Encouraging patients and carers to ask their clinician about clinical research (and log response/suggestions) • Encouraging clinicians to consider their response if a patient does ask: how to channel interest
EFPIA-PhRMA survey of patient groups 2013
NIHR leadership in public involvement in UK health research • Core principle of National Institute for Health Research (NIHR) • Leadership from the top • Support including £M investment • Capacity and capability • Clear expectation set with NIHR funded researchers • Models and approaches built on ‘partnership’ • ‘Marriage-maker’ or ‘deal-breaker’
NIHR CLAHRC leadership in public involvement in UK health research
‘Strategic localism’ Academic Health Science Networks (AHSNs) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) Local Clinical Research Networks
The secret of a happy marriage in CLAHRC PPI….? • Say ‘I love you’ ten times a week. • Having three arguments a month adds to the magic! • Say ‘sorry.’ • Accept each other’s faults….. Based on OnePoll Survey, USA, February 2014
Thank you Simon.Denegri@nihr.ac.uk www.invo.org.uk Twitter: @SDenegri Blog: http://simondenegri.com/ involvementlastminute.com
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