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 byIain 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, 16/09/13Paper 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

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: 2013http://www.hra.nhs.uk/news/2013/11/22/patient-involvement-increases-public-confidence-health-research/#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 UniversitySpeaking 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 researchChoosing to take part in researchKnowing their contribution has made a differenceShaping the way in which research is designed and

deliveredLeading change at local and national level to make

research happenReporting on and sharing their experiences with

commissioners and providers

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

From willing to active research citizens

‘OK to Ask’ campaign: Internation

al Clinical Trials Day

2013

– Clear, simple message– Patient-facing– Easy to deliver– Hsopital focus

• 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’

Local Clinical Research Networks

Collaborations for Leadership in Applied Health Research and

Care (CLAHRCs)

Academic Health Science Networks

(AHSNs)

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 youSimon.Denegri@nihr.ac.uk

www.invo.org.uk Twitter: @SDenegri

Blog: http://simondenegri.com/

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