make it clear: the public are important to research excellence 8 th annual trainees meeting, leeds,...
TRANSCRIPT
Make it clear: the public are important to research excellence
8th Annual Trainees Meeting, Leeds, 10th November 2014
Simon Denegri, NIHR National Director for Patients and the Public and Chair, INVOLVE (UK)
Why would you set off on a voyage knowing you only have half the
knowledge important to your journey?
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
“I have always taken the view that public involvement in research should
be the rule not the exception.”
Professor Dame Sally DaviesChief Medical Officer (CMO)
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
Setting research priorities
http://www.netscc.ac.uk/news/item/08042013.asp
Or half a crew…….?
“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 WilliamsProfessor of Dermato-Epidemiology and Director,
Centre of Evidence-Based Dermatology, University of Nottingham
Increasing effectiveness and efficiency
‘The aim of patient and public involvementis to improve the quality, feasibility and translational value of
research...[This] is the first timewe 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, 16/09/13Paper 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
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: 2013http://www.hra.nhs.uk/news/2013/11/22/patient-involvement-increases-public-confidence-health-research/#sthash.x3fCMNWj.dpuf
Putting the public together with research and innovation is the way to
ensure the NHS meets future challenges
‘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
The public want to help so why shut the door on them…..
“If I can be part of [the trial] it is a good thing. Without the volunteers they can’t progress this forward.”
Ruth AtkinsNHS employee, mum and Ebola vaccine clinical trial participant
The public and research1000
600,000
3,000,00011.2 Million
89% of people are willing to take part in research
3% of people would not take part in a clinical trial
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
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 EdwardOpera singer, Ebola vaccine clinical
trial volunteer on standby!
Writing and using plain English summaries
• 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
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
.
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.
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
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)
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/
Twitter: @SDenegriBlog: http://simondenegri.com/
involvementlastminute.com