Public involvement in UK health research: why, how and where next?

Canadian Institutes for Health Research (CIHR), Ottawa, Canada, Simon Denegri, January 2014

Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research (UK)

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

Public involvement in health research: why?

• Accountability – ‘protect and promote the public interest’

• Improve the quality of what we do• Ensure value and efficiency• knowledge creation• Advocate change

A working definition of public involvement

INVOLVE defines public involvement in research as 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.

NIHR leadership in public involvement in UK health research

• Core principle of National Institute for Health Research (NIHR)

• Leadership from the top• A solid platform on which to build• Clear expectation set with NIHR funded researchers• Models and approaches built on ‘partnership’ • Support including £M investment

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

Established in 1996 INVOLVE is a national advisory group funded by, and part of, the National Institute for Health Research. http://www.invo.org.uk/

What is INVOLVE?

How we do it? • Leadership across NIHR• Build and share the evidence base• Develop capacity and capability• Influence policy and practice

Developing capacity and capability

INVOLVE resources to support public involvement in 2012/3:• ‘invoDIRECT,’ an online directory of networks, groups and organisations

that support active involvement in research• An ‘Involvement Cost Calculator’ to help people budget for the costs of

public involvement• Published case studies that contribute to the evidence base on the impact

of public involvement • A joint webinar series with the NIHR School for Social Care Research on

public involvement in social care research“Some researchers are concerned that while research organisations are

making involvement a requirement for funding or support, not all researchers know how to do it well…..”

Kristina Stanley, TwoCanAssociates Report for Mental Health Research Network (MHRN), March 2012:

http://www.mhrn.info/data/files/MHRN_PUBLICATIONS/REPORTS/ServiceUserInvolvementEvaluationShort.pdf

Adding value: setting research priorities

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

Changing practice- NIHR programme- Lancet #Research series

http://download.thelancet.com/pdfs/journals/lancet/PIIS0140673613622291.pdf?id=a02f57d1811fcb77:34c23d79:14370072c4a:512e1389161461812

Setting research priorities

http://www.netscc.ac.uk/news/item/08042013.asp

Ensuring value 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

‘Protect and promote the public interest’

An opportunity for shared regulation?

• 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

The policy context• Life Sciences Strategy• Health and Social Care Act 2012• NHS Choice Framework• NHS Constitution; use of medical records in research• Re-organisation around local geographies: CCGs, Healthwatch,

Local Clinical Research Networks (LCRNs), Academic Health Science Networks (AHSNs)

‘Patient experience is the most important concern for the NHS Commissioning Board’

Sir Malcolm Grant , Chair, NHS Commissioning Board

‘Strategic localism’

Local Clinical Research Networks

Collaborations for Leadership in Applied Health Research and

Care (CLAHRCs)

Academic Health Science Networks

(AHSNs)

‘Convergence!?*!’

‘Research active’ communities

‘Every patient to be a research patient’Rt. Hon David Cameron MP, UK Prime Minister, 5th December

2011, Launch of Government Life Sciences Strategy

Best research, with citizens, for best health

• Supporting patient choice by providing the right information and tools

• Digital strategy supporting new media use by patients and the public

• Patient leadership supporting research in different contexts

• Patient and public involvement that delivers quality research and efficient delivery

• Using patient insight and experience to improve what we do

Citizens making research happen

• 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

From willing to active….

• More than one third of people do not feel well-informed about clinical research

• Less than 20% of people would feel confident about asking their doctor or medical specialist about taking part in a research study

NIHR Clinical Research Networks (CRN) Survey, June 2013http://www.crncc.nihr.ac.uk/

‘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

Research champions in care settings

“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

UKCTG Public Feedback

• Only 28% had taken part in a clinical trial• 38% knew little or nothing about clinical trials and would like a clear and reliable

source of information to learn more; • 64% would like to find out about trials recruiting in their local area • 66% found UKCTG ‘easy’ or ‘very easy’ to find their way around • 67% found the information provided on the site ‘very clear’ or ‘fairly clear’• 72% said that UKCTG should help them make direct contact with a clinical trial

without going through their doctor• 88% said the site should provide relevant links to patient groups, medical

researchers and funders relevant to a clinical trial • 88% would recommend the site to others.

Young people: a success story

Thank youSimon.Denegri@nihr.ac.uk

www.invo.org.uk Twitter: @SDenegri

Blog: http://simondenegri.com/

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