Public involvement in UK health research: why, how
and where next?
Canadian Institutes for Health Research (CIHR), Ottawa,...
Adding value to research
The issue:
‘Only 9% of patients
wanted more research on
drugs, yet over 80% of
randomised control...
Public involvement in health research:
why?
• Accountability – ‘protect and promote
the public interest’
• Improve the qua...
A working definition of public
involvement
INVOLVE defines public involvement in research as
research being carried out ‘w...
NIHR leadership in public involvement
in UK health research
• Core principle of National Institute for Health
Research (NI...
What is INVOLVE?
What we aspire to:

How we do it?

A dynamic partnership between the
public, researchers and others, to
a...
Developing capacity and capability
INVOLVE resources to support public involvement in 2012/3:
• ‘invoDIRECT,’ an online di...
Adding value: setting research
priorities
The issue:
‘Only 9% of patients
wanted more research on
drugs, yet over 80% of
r...
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 transl...
‘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 w...
The policy context
•
•
•
•
•

Life Sciences Strategy
Health and Social Care Act 2012
NHS Choice Framework
NHS Constitution...
‘Strategic localism’

Academic Health
Science Networks
(AHSNs)

Collaborations
for Leadership in
Applied Health
Research a...
‘Convergence!?*!’
‘Research active’ communities
‘Every patient to be a research patient’
Rt. Hon David Cameron MP, UK Prime Minister, 5th December
2011, Launch of Governm...
Best research, with citizens, for best
health
• Supporting patient choice by providing the right
information and tools
• D...
Citizens making research happen
• Vision will be achieved by citizens:
Asking about research
Choosing to take part in re...
From willing to active research
citizens
Public appetite
• 82 per cent of people believe it is
important for the NHS to of...
From willing to active research
citizens

IPSOS MORI Poll for Association of Medical Research Charities, 2011
From willing to active….
• More than one third of people do not feel well-informed
about clinical research
• Less than 20%...
–
–
–
–

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

‘OK to Ask’
campaign:
International
Clinical...
Research champions in care
settings
“In the future the public will be more technically
sophisticated, inquisitive and informed than ever
before.”
Professor Sa...
UKCTG Public Feedback
•
•
•
•
•
•
•
•

Only 28% had taken part in a clinical trial
38% knew little or nothing about clinic...
Young people: a success story
Thank you
Simon.Denegri@nihr.ac.uk
www.invo.org.uk
Twitter: @SDenegri
Blog: http://simondenegri.com/

involvementlastminut...
Cihr guest presentation and webinar   afternoon talk - january 2014
Cihr guest presentation and webinar   afternoon talk - january 2014
Cihr guest presentation and webinar   afternoon talk - january 2014
Cihr guest presentation and webinar   afternoon talk - january 2014
Cihr guest presentation and webinar   afternoon talk - january 2014
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Cihr guest presentation and webinar afternoon talk - january 2014

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Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014

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  • Went to PPI leads, on the website and to the patient ambassadors
  • Cihr guest presentation and webinar afternoon talk - january 2014

    1. 1. 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)
    2. 2. 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 by Iain 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
    3. 3. 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
    4. 4. 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.
    5. 5. 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
    6. 6. What is INVOLVE? What we aspire to: How we do it? 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/ Leadership across NIHR Build and share the evidence base Develop capacity and capability Influence policy and practice
    7. 7. 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/ServiceUse rInvolvementEvaluationShort.pdf
    8. 8. 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 by Iain 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
    9. 9. Setting research priorities http://www.netscc.ac.uk/news/item/08042013.asp
    10. 10. 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, 16/09/13 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 Design
    11. 11. ‘Protect and promote the public interest’
    12. 12. 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: 2013 http://www.hra.nhs.uk/news/2013/11/22/patient-involvement-increases-publicconfidence-health-research/#sthash.x3fCMNWj.dpuf
    13. 13. 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
    14. 14. ‘Strategic localism’ Academic Health Science Networks (AHSNs) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) Local Clinical Research Networks
    15. 15. ‘Convergence!?*!’
    16. 16. ‘Research active’ communities
    17. 17. ‘Every patient to be a research patient’ Rt. Hon David Cameron MP, UK Prime Minister, 5th December 2011, Launch of Government Life Sciences Strategy
    18. 18. 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
    19. 19. Citizens making research happen • Vision will be achieved by citizens: Asking about research Choosing to take part in research Knowing their contribution has made a difference Shaping the way in which research is designed and delivered Leading change at local and national level to make research happen Reporting on and sharing their experiences with commissioners and providers
    20. 20. From willing to active research citizens 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
    21. 21. From willing to active research citizens IPSOS MORI Poll for Association of Medical Research Charities, 2011
    22. 22. 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 2013 http://www.crncc.nihr.ac.uk/
    23. 23. – – – – Clear, simple message Patient-facing Easy to deliver Hsopital focus ‘OK to Ask’ campaign: International Clinical Trials Day 2013 • 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
    24. 24. Research champions in care settings
    25. 25. “In the future the public will be more technically sophisticated, inquisitive and informed than ever before.” Professor Samuel Thier, Harvard University Speaking at the launch of the UK eHealth Informatics Research Centres and Network, May 2013
    26. 26. 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.
    27. 27. Young people: a success story
    28. 28. Thank you Simon.Denegri@nihr.ac.uk www.invo.org.uk Twitter: @SDenegri Blog: http://simondenegri.com/ involvementlastminute.com
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