1. Open to all: the role of public involvement in health research Faculty of Health and Social Care, Open University, Wednesday 9 th December 2015 Simon Denegri, NIHR National Director for Patients and the Public in Research and Chair, INVOLVE

2. Why involve the public in research? Research excellence Accountability Value and efficiency Greater participation Knowledge transfer More relevant outcomes Transparency “I have always taken the view that public involvement in research should be the rule not the exception.” Professor Dame Sally Davies, Chief Medical Officer (CMO)

3. Why do people get involved? Personal need or benefit To have a say – ‘voice’ Wanting to make a difference To change how care is given Altruism Frustration Personal development Control…….

4. The way to public involvement Clarity of purpose Leadership Partnership Support Foundations

5. Public involvement in the UK National Institute for Health Research (NIHR ) A core principle of NIHR’s >£1bn ‘business’ Root and branch focus on public interest Clear expectation set with researchers Success built on ‘partnership’ working Solid and sustainable funding Open and transparent

6. A working definition of public involvement ….public involvement in research = 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.

7. 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.

8. Public voice in the research cycle

9. 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 How we do it? Leadership across the NIHR Building and sharing the evidence base Developing capacity and capability Influencing policy and practice INVOLVE: A platform for change

10. http://bmjopen.bmj.com/content/3/5/e002521.full

11. Setting expectations, supporting change Plain English summaries in NIHR funded research The NIHR is committed to making sure that each research study it funds has a clear and concise plain English summary From 14 May 2014 a good quality plain English summary, submitted as part of the standard application form, has been a requirement of NIHR funding. http://www.invo.org.uk/resource- centre/plain-english- summaries/nihr-funding- applications/

12. Creating community, building voice > 1000 ‘reviewers’ > 600,000 research participants In 2013/14 89% of British people are willing to take part in research Only 3% of British people would not take part in a clinical trial http://www.nihr.ac.uk/documents/about- NIHR/NIHR- Publications/NIHR%20Christmas%20xma s%20stats%202014.pdf

13. Adding value to research ‘ 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

14. Relevance: research priorities http://www.netscc.ac.uk/news/item/08042013.asp

15. Research that is relevant James Lind Alliance Priority Setting Partnerships (PSPs) 31 completed, 23 on the way 26000+ participants 35 top ’10s’

16. Research that is efficient ‘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

17. Reach: seldom heard groups, and young people http://www.clahrc-em.nihr.ac.uk/clahrc-em- nihr/east-midlands-centre-for-black-and- minority-ethnic-health.aspx

18. Partners in innovation “I don’t actually think of the patients who work with us as PPI members: they’re colleagues, they’re people with good ideas. To me, they’re part of the team like the statistician or the qualitative researcher or the clinician.” Professor Hywel Williams, Professor of Dermato-Epidemiology and Director, Centre of Evidence-Based Dermatology, University of Nottingham Senior Investigators, Leaders for patient and public involvement in research, INVOLVE 2014

19. Research that is accessible

20. ‘Going the extra mile’ ‘A population actively involved in research to improve health and wellbeing for themselves, their family and their communities’ ‘Over the next 10 years the NIHR must…..develop a relationship with the public such that it becomes second nature to what it does, as integral to the research it funds as accurate measurement. ‘

21. Stop ticking the box…..…

22. Thank you Simon.Denegri@nihr.ac.uk Twitter: @Sdenegri Blog: http://simondenegri.com/http://simondenegri.com/ Simon Denegri, NIHR National Director for Patients and the Public in Research and Chair, INVOLVE