1. Make it clear: the public are important to research excellence 8 th Annual Trainees Meeting, Leeds, 10 th November 2014 Simon Denegri, NIHR National Director for Patients and the Public and Chair, INVOLVE (UK)

2. Why would you set off on a voyage knowing you only have half the knowledge important to your journey?

3. NIHR leadership in public involvement in research Core principle of National Institute for Health Research (NIHR) Clear expectation set with research community that it is important to research excellence £ Investment and practical support Partnership approach www.invo.org.uk

4. “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)

5. Improving the quality of what we do ‘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

6. Setting research priorities http://www.netscc.ac.uk/news/item/08042013.asp

7. Or half a crew…….?

8. “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. I don’t see a boundary. Patient and public involvement is essential, integral and natural to what we do.” Professor Hywel Williams Professor of Dermato-Epidemiology and Director, Centre of Evidence-Based Dermatology, University of Nottingham

9. Increasing 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.112.119818doi: 10.1192/bjp.bp.112.119818 Design

10. Ensuring public confidence 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/patient- involvement-increases-public-confidence-health- research/#sthash.x3fCMNWj.dpuf

11. http://www.rphr.org.uk/

12. Putting the public together with research and innovation is the way to ensure the NHS meets future challenges

13. ‘We stand on the cusp of a revolution in the role that patients – and also communities – will play in their own health and care. Harnessing what I’ve called this renewable energy is potentially the make-it or break-it difference between the NHS being sustainable – or not.’ Simon Stevens, NHS CEO, NHS Confederation Annual Conference, June 2014

14. The public want to help so why shut the door on them…..

15. “If I can be part of [the trial] it is a good thing. Without the volunteers they can’t progress this forward.” Ruth Atkins NHS employee, mum and Ebola vaccine clinical trial participant

16. The public and research 1000 600,000 3,000,000 11.2 Million 89% of people are willing to take part in research 3% of people would not take part in a clinical trial

17. Public appetite 82 per cent of people believe it is important for the NHS to offer opportunities to take part in healthcare research. 3% said they would never take part in a clinical research study. NIHR Clinical Research Networks Survey Oct 2014 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 2012/2013/2014 – 1 in 3 patients had a discussion about research with a health professional 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 patients

18. The baked beans test “Some people sit in a bath of baked beans or run a marathon. For me, I just thought ‘if not me then who?’ “It’s nice to be part of it and it gives you a way to help.” Sheridan Edward Opera singer, Ebola vaccine clinical trial volunteer on standby!

19. Writing and using plain English summaries

20. Good quality plain English summaries essential to public understanding and involvement Beginning 14 May 2014 a good quality plain English summary is a requirement of NIHR funding. Approach developed by INVOLVE on behalf of NIHR Reflected in supporting guidance and processes Work will be assessed in 12 – 18 months Background

21. A plain English summary is important for everybody so they can find out about and understand your research : all reviewers use this summary to inform their review of funding applications summaries of funded research are made publicly available on NIHR, Health Research Authority (HRA) and other research websites to inform the public and researchers patient information sheets and consent forms require information in plain English Clinical Research Network portfolio and UK Clinical Trials Gateway NIHR journal, newsletters, websites, social media, charities.

22. What makes a good quality plain English summary? it is clear, easy to read and is as jargon free as possible it provides an overview of the entire research study that readers can understand straight away.

23. Simple rules consider your audience and what they need avoid jargon and technical terms keep sentences short use everyday English break up text for example use bullets think about structure and order of text

24. Getting your summary right now….? will save you time later. is a foundation on which you can build and adapt as your research develops. Will help you secure your funding (If it is felt that a plain English summary is not clear and of a good quality when you apply for NIHR funding then you may be required to amend your summary prior to final funding approval)

25. Further information Visit the NIHR ‘make it clear’ webpage to find out more www.involve.nihr.ac.uk/makeitclear or contact the NIHR Research Design Service www.rds.nihr.ac.uk/

26. Questions Simon.Denegri@nihr.ac.uk Twitter: @SDenegri Blog: http://simondenegri.com/http://simondenegri.com/ involvementlastminute.com