This presentation includes slides detailing the initial findings from the NIHR Strategic Review of public involvement in research entitled 'Breaking Boundaries.'
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Presentation to National Institute for Health Research (NIHR) Public Involvement leads: July 22nd 2014
1. NIHR/INVOLVE Public Involvement Leads
Meeting
Kings Fund, London, July 22nd, 2014
Simon Denegri, Chair, INVOLVE; NIHR National Director
for Patients and the Public
6. ‘Coming together is a beginning, staying
together is progress, and working together
is success.’
Henry Ford
7. NIHR ‘Breaking Boundaries’ Review of Public
Involvement
Simon Denegri, Chair, INVOLVE; NIHR National Director
for Patients and the Public
Rachel Matthews, Review Adviser; PPI Theme Lead, CLAHRC NWL
8. What is the ‘Breaking Boundaries’ review?
• A strategic review to examine future options in
building an active collaboration with the public and
making best use of their skills, knowledge and
experience.
• Aims to build on achievements in public involvement
to help deliver future ambitions for research and a
healthier nation
• It will shape tone, style and approach to public
involvement across the NIHR over the next 10 years.
9. Five areas of inquiry
1. Overall evaluation of progress to date
2. Barriers to public involvement
3. How we can do things differently
4. Future design and delivery
5. What will success look like
Review will report in the autumn ahead of the INVOLVE
Conference, Birmingham, 26/7 November 2014
10. The response
1. Individuals – 500 plus, most from patients,
public, service users
2. Organisations – 80 plus and a few more
coming in
3. Collaborative – regional, institutional,
functional
4. Oral evidence – evidence session with intl
guests, charities and industry
5. Local discussions – RAPPORT , NWPiRF
11. Nuffield Dept Primary Care Health Sciences, University of Oxford
Leeds Teaching Hospitals BRC and CRF
Faculty of Health and Applied Sciences (HAS) - Uni. of the West of England
NIHR Clinical Research Network
Wellcome Trust Clinical Research Facility, University of Edinburgh
RDS South Central
South Yorkshire PPI Strategy Group
NIHR Birmingham Liver Biomedical Research Unit (BRU)
NIGR Nottingham Hearing Biomedical Research Unit
Involvement in Research & Development, Berkshire Healthcare Foundation Trust
Department of Health Sciences PPI Committee, University of York
Service Users in Research Advisory Group, via CRN: Mental Health
Universities of Kent, Hertfordshire, East Anglia and Warwick / RCN Research
Institute
HCAI Research Network
NIHR CRN: Children/PPI Manager for NIHR Alder Hey CRF
NHS R&D Forum Service user and carer sub group.
Centre for Research in Primary & Community Care, Uni of Hertfordshire, Hatfield
One Research Ltd, Sussex Innovation Centre, Science Park Sq. Uni of Sussex,
Brighton
Leeds Institute for Clinical Trials Research
Clinical Research Network: Mental Health
Social Care Institute for Excellence
Marie Curie Cancer Care
The McPin Foundation (www.mcpin.org)
NIHR CLAHRC East Midlands
NIHR CRN SWP
MRC HTMR Network
Central Manchester NHS Trust
Clinical Research Network West of England
Nottingham University Hospitals NHS Trust
Leeds Metropolitan University
Clinical Research Network - Mental Health
Clinical Research Network - Mental Health
University of Liverpool
NIHR Biomed. Research Unit on Lewy Body Dementia / Centre on Ageing &
Chronic Illness
Research Institute for Primary Care and Health Sciences, Keele University
Biomedical Research Centre & Research Directorate, Uni. College London Hospitals
University of Manchester / Central Manchester Universities NHS Fdn Trust
Clinical Research Office, Sheffield Teaching Hospitals & University of Sheffield
NIHR Devices for Dignity Healthcare Technology Co-operative
University of Salford
United Kingdom Clinical Research Facility (UKCRF) Network
University of Leeds
PenCLAHRC
NIHR / Wellcome Trust Clinical Research Facility, Cambridge University Hospital
NIHR Research Design Service West Midlands
Northumbria University
Northumbria University
National Institute for Health and Care Excellence (NICE)
Cancer Research UK
University College London Hospitals
DECIPHer. UKCRC Public Health Research Centre of Excellence- Cardiff, Bristol &
Swansea Uni's
Barts Health NHS Trust
NIHR Imperial Biomedical Research Centre (BRC) & Patient Experience Research
Centre (PERC)
Asthma UK
CRN West Midlands
PRIMER – the PPI group for the Centre for Primary Care, University of Manchester
Health Research Authority
North Bristol NHS Trust
NIHR Trainees Coordinating Centre (TCC)
NETSCC
British Heart Foundation (BHF)
Association of Medical Research Charities
INVOLVE Coordinating Centre
CLAHRC East of England
CRN Central response
Cicely Saunders Institute, King's College, London
12. Theme 1: Overall evaluation of progress to date
• Progress has been made but not consistently across
NIHR
• Research is becoming more relevant to patients and
carers
• Greater potential for implementation of research
evidence
• Evidence of transformative nature of public
involvement personally and professionally
13. Theme 2: What stops public involvement?
• Attitudes - scepticism, mistrust, lack of awareness,
communication and curiosity
• Resources – time, money, infrastructure to meet increased
demand, inconsistent reward and reimbursement policies,
procedures and practices across NIHR, NHS, Higher Education
and voluntary sector
• Training and support – inconsistent opportunities
• Confusing and inconsistent expectations from different parts
of NIHR combined with variable performance and limited
evidence of effective practice and impact
• Leadership - more leaders to promote and practice public
involvement
14. Theme 3: Doing public involvement differently
• Practice - Increase critical practice – more publication
on ‘how’, introduce standards
• Promotion- Better promotion of effective involvement,
more outreach
• Learn from other sectors and disciplines
• Only fund studies and programmes where there is
confidence about the standard of public involvement
• Inclusive – more reflective of wider society
15. Theme 4: How do we do it? The future design
and delivery of public involvement in NIHR
• Coordinate and collaborate – better strategic
development
• Better models of collaboration between lay
people and researchers
• Strategic and systematic approach to the
collection of evidence across NIHR
16. Theme 5: Where should we be with public
involvement in NIHR in ten years?
• Public involvement is normal and accepted practice
• Enhanced evidence base with better consensus on
value of public involvement
• Agreed methods and indicators of impact
• Greater public awareness of research and NIHR
• Global leadership in scholarship and the study of
public involvement in research
17. Learning from other sectors and
disciplines
• Third sector
• Private sector – ‘club cards’
• Urban planning – citizen science
• Sense about science – Ben Goldacre
• Education – School governor model
• Technology and digital sector – Future gov
18. Is there a question you would have
liked us to ask?
• What should we ensure isn’t lost in thinking
differently about public involvement in
research?
• The development and use of experiential
knowledge in research, rather than were
members of the public in the room at a
research meeting
• What are the top three priorities to ensure
success?
19. What next?
• Review panel currently reflecting on evidence
• Panel meets again in September and October
• Ongoing testing of ideas i.e. tweetchats
• Report and recommendations to be published
ahead of INVOLVE conference: 26/7 November
With thanks to CLAHRC NWL for their expert support
ppi.review@nihr.ac.uk
Notas do Editor
1
Time and resource considerations
We understand that there are limited time and resources to devote to this activity and acknowledge that it may not be possible to cover all the themes outlined in the ‘call for evidence’ document.
As a facilitator you may want to work with the group to select areas that they feel will be most useful to address and which may bring benefit to their own work and activity.
For example, some groups may find it beneficial to explore each of the 5 themes to create a comprehensive picture of PPI; other groups may prefer to focus on one or two themes.
It would be helpful to understand if there is specific reasoning behind the selection for particular themes.
Themes and prompts
Theme 1: Overall evaluation of progress to date
If you had to tell a story about PPI, where would it start and where is it now?
What stands out?
How do you think others might tell the story?
Theme 2: What stops public involvement?
What gets in the way?
Where do ‘blockages’ happen?
Do you perceive any patterns in what stops public involvement?
How do you think others perceive ‘blockages’?
Theme 3: Doing public involvement differently
How else could public involvement be done?
What should be stopped?
What could be grown and developed?
What would be different?
How would you know?
Theme 4: How do we do it? The future design and delivery of public involvement in NIHR
How do we make ideas come to life?
What pulls people together?
Who needs to be involved?
How should people work together?
What incentivises effective practice?
Theme 5: Where should we be with public involvement in NIHR in ten years?
What would you like to be doing in 10 years?
What would be happening?
What about the next generation of patients, carers, researchers, healthcare professionals, funders, commissioners?
How will they want to work together?
What will their expectations be?
7
A strategic review to examine future options in building an active collaboration with the public and making best use of their skills, knowledge and experience, in the work of the National Institute for Health Research (NIHR).
The National Institute for Health Research (NIHR) is a world-leader in promoting and advancing active public involvement resulting in high quality health and social care research.
Over almost a decade, patients, carers and members of the public have contributed to the work of NIHR by helping it to decide what research to fund and how it should do this. They review and shape research projects and proposals and actively collaborate with researchers, clinicians and other health professionals to deliver and disseminate research results. Their knowledge and insight play a vital role in helping the UK to recruit hundreds of thousands of volunteers to studies every year. A summary of this work can be found in NIHR’s annual report for 2012/13: http://viewer.zmags.com/publication/26f799ac#/26f799ac/1
This activity is supported across the NIHR by many individuals and colleagues with responsibility for public involvement in their organisation. NIHR also funds INVOLVE, the national advisory group for the promotion and advancement of public involvement in research which has played in a pivotal role in the development of public involvement in the UK over the last two decades: www.invo.org.uk
NIHR is now inviting views and comments on how it can build on its achievements in public involvement so far to create the sort of active collaboration between the public, researchers and clinicians essential to the delivery of its future ambitions for research and a healthier nation. Of particular interest will be the innovations, ideas and new approaches that will help it break new ground in this important area.
Time and resource considerations
We understand that there are limited time and resources to devote to this activity and acknowledge that it may not be possible to cover all the themes outlined in the ‘call for evidence’ document.
As a facilitator you may want to work with the group to select areas that they feel will be most useful to address and which may bring benefit to their own work and activity.
For example, some groups may find it beneficial to explore each of the 5 themes to create a comprehensive picture of PPI; other groups may prefer to focus on one or two themes.
It would be helpful to understand if there is specific reasoning behind the selection for particular themes.
Themes and prompts
Theme 1: Overall evaluation of progress to date
If you had to tell a story about PPI, where would it start and where is it now?
What stands out?
How do you think others might tell the story?
Theme 2: What stops public involvement?
What gets in the way?
Where do ‘blockages’ happen?
Do you perceive any patterns in what stops public involvement?
How do you think others perceive ‘blockages’?
Theme 3: Doing public involvement differently
How else could public involvement be done?
What should be stopped?
What could be grown and developed?
What would be different?
How would you know?
Theme 4: How do we do it? The future design and delivery of public involvement in NIHR
How do we make ideas come to life?
What pulls people together?
Who needs to be involved?
How should people work together?
What incentivises effective practice?
Theme 5: Where should we be with public involvement in NIHR in ten years?
What would you like to be doing in 10 years?
What would be happening?
What about the next generation of patients, carers, researchers, healthcare professionals, funders, commissioners?
How will they want to work together?
What will their expectations be?
Time and resource considerations
We understand that there are limited time and resources to devote to this activity and acknowledge that it may not be possible to cover all the themes outlined in the ‘call for evidence’ document.
As a facilitator you may want to work with the group to select areas that they feel will be most useful to address and which may bring benefit to their own work and activity.
For example, some groups may find it beneficial to explore each of the 5 themes to create a comprehensive picture of PPI; other groups may prefer to focus on one or two themes.
It would be helpful to understand if there is specific reasoning behind the selection for particular themes.
Themes and prompts
Theme 1: Overall evaluation of progress to date
If you had to tell a story about PPI, where would it start and where is it now?
What stands out?
How do you think others might tell the story?
Theme 2: What stops public involvement?
What gets in the way?
Where do ‘blockages’ happen?
Do you perceive any patterns in what stops public involvement?
How do you think others perceive ‘blockages’?
Theme 3: Doing public involvement differently
How else could public involvement be done?
What should be stopped?
What could be grown and developed?
What would be different?
How would you know?
Theme 4: How do we do it? The future design and delivery of public involvement in NIHR
How do we make ideas come to life?
What pulls people together?
Who needs to be involved?
How should people work together?
What incentivises effective practice?
Theme 5: Where should we be with public involvement in NIHR in ten years?
What would you like to be doing in 10 years?
What would be happening?
What about the next generation of patients, carers, researchers, healthcare professionals, funders, commissioners?
How will they want to work together?
What will their expectations be?
Managing and closing conversations
It is likely that a lot of material will be generated and it may not be possible to use all the evidence generated.
You may wish to build in checkpoints as the conversation progresses and at the end along the lines of:
Is/are there was 1(2 or 3) thing (s) you think should be addressed?
And finally…
What were your reflections as a facilitator?
What went well?
What would you do differently?