Presentation to National Institute for Health Research (NIHR) Public Involvement leads: July 22nd 2014
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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
- 2. How do we create the future?
- 3. Themes for the day • Leadership • Collaboration • Networking • Shared learning and support • Cohesion, consistency and continuity
- 4. What does ‘One NIHR’ look like for PPI?
- 5. What does ‘One NIHR’ look like for PPI?
- 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
Editor's Notes
- 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?