Update on NIHR Strategic Review of Public Involvement in Research 2014 'Breaking Boundaries'
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A brief overview and update on progress with NIHR's strategic review of public involvement in research. This was given prior to the deadline for providing views and opinions.
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Update on NIHR Strategic Review of Public Involvement in Research 2014 'Breaking Boundaries'
- 1. NIHR ‘Breaking Boundaries’ Review of Public Involvement Health Services Research Network (HSRN), Nottingham, June 20th, 2014 Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research (UK)
- 2. Cometh the hour, cometh the patient ‘We stand on the cusp of a revolution in the role that patients – and also communities – will play in their own health and care. Harnessing what I’ve called this renewable energy is potentially the make-it or break-it difference between the NHS being sustainable – or not.’ Simon Stevens, NHS CEO, NHS Confederation Annual Conference, June 2014
- 3. 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.
- 4. 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
- 5. Emerging themes 1. Value of public involvement 2. Quality and standards 3. Models of delivery: centralised versus localised 4. Evidence into practice: how to spread embed effective, purposeful practice? 5. Support, relationships, incentives
- 6. Your feedback • HSRN survey on people’s chairs • Submissions can be made up until 26th June – Online: https://www.surveymonkey.com/s/NIHRbreakingboundaries – Using formal submission document: http://www.nihr.ac.uk/awareness/Pages/BreakingBoundaries_Callfor Evidence.aspx – Taking part in Tweetchats (Details to be announced) 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?
- 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?