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4401 INVOLVE EXPLORING IMPACT A4-116PP:INVOLVE EXPLORING 03 Contents page Foreword 04 Acknowledgements 06 Summary 07 1. Introduction 11 2. Methods 15 3. Context to the findings 21 4. Findings from the literature review 25 4.1 Impact on the research agenda 26 4.2 Impact on research design and delivery 30 4.3 Impact on research ethics 50 4.4 Impact on the public involved 53 4.5 Impact on researchers 64 4.6 Impact on research participants 69 TURNING THE PYRAMID UPSIDE DOWN: EXAMPLES OF PUBLIC Turning the pyramid upside down: examples of public involvement in social care research October 2010 BUDGETING FOR INVOLVEMENT Budgeting for involvement: Practical advice on budgeting for actively . involving the public in research studies . June 2013 SAMPLE WORKING GROUP DISCUSSION PAPERS Empowerment Working Group – discussion paper B Developing a guide for members of the public about receiving payments for involvement In the Operational Plan TRAINING SEMINAR REPORT 2004 (PDF) Published by the INVOLVE Support Unit October 2004 ISBN: 0-9541215-4-6 Ref: Steel R. (2004) Training for Public Involvement in Research: Seminar Report 22nd April 2004, 89 Albert Embankment, London.INVOLVE UK STANDARDS FOR PUBLIC INVOLVEMENT 2 UK Standards for Public Involvement in Research Introduction The National Institute for Health Research (NIHR), Chief Scientist Office (CSO) Scotland, Health and Care Research Wales, and the Public Health Agency Northern Ireland invites people to use CO-PRODUCTION IN ACTION 3 Key principles Sharing of power – the research is jointly owned and people work together to achieve a joint understanding Including all perspectives and skills – make sure the research team includes all those who can make a contribution Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance BRIEFING NOTES FOR RESEARCHERS: PUBLIC INVOLVEMENT IN NHS Briefing note two: What is public involvement in research? 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, PAYMENT FOR INVOLVEMENT www.invo.org.uk www.invo.org.uk 2 • It supports equity of power in research partnerships which involve the public and professionals. • Making payments to the INVOLVING YOUNG PEOPLE IN RESEARCH (PDF) Published by the INVOLVE Support Unit September 2004 ISBN: 0-9541215-3-8 Ref: Kirby P. (2004) ‘A Guide to Actively Involving Young People in Research: For GUIDE FOR PUBLIC CONTRIBUTORS ON CLAIMING FEES AND EXPENSES Central Commissioning Facility - Reward and recognition for public contributors: A guide to the payment of fees and expenses Date: June 2015 Version: 03 Review date: August 2015 GUIDANCE ON THE USE OF SOCIAL MEDIA TO ACTIVELY INVOLVE About this guidance This guidance provides examples of ways in which different types of social media are currently being used to involve the public in research, the DIVERSITY AND INCLUSION IN DEMENTIA RESEARCH 28 The Journal of Dementia Care September/October 2019 Vol 27 No 5 Arecent briefing paper by the British Psychological Society (2018) asserted that people from black, Asian and TURNING THE PYRAMID UPSIDE DOWN: EXAMPLES OF PUBLIC Turning the pyramid upside down: examples of public involvement in social care research October 2010 DIVERSITY AND INCLUSION PROJECT GROUP TERMS OF REFERENCE Diversity and Inclusion Working Group ToR V3 - 3 Professional members of the group will join with agreement of their organisation who will cover the resources needed to participate in meetings. UK STANDARDS FOR PUBLIC INVOLVEMENT 2 UK Standards for Public Involvement in Research Introduction The National Institute for Health Research (NIHR), Chief Scientist Office (CSO) Scotland, Health and Care Research Wales, and the Public Health Agency Northern Ireland invites people to use CO-PRODUCTION IN ACTION 3 Key principles Sharing of power – the research is jointly owned and people work together to achieve a joint understanding Including all perspectives and skills – make sure the research team includes all those who can make a contribution Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance BRIEFING NOTES FOR RESEARCHERS: PUBLIC INVOLVEMENT IN NHS Briefing note two: What is public involvement in research? 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, PAYMENT FOR INVOLVEMENT www.invo.org.uk www.invo.org.uk 2 • It supports equity of power in research partnerships which involve the public and professionals. • Making payments to the INVOLVING YOUNG PEOPLE IN RESEARCH (PDF) Published by the INVOLVE Support Unit September 2004 ISBN: 0-9541215-3-8 Ref: Kirby P. (2004) ‘A Guide to Actively Involving Young People in Research: For GUIDE FOR PUBLIC CONTRIBUTORS ON CLAIMING FEES AND EXPENSES Central Commissioning Facility - Reward and recognition for public contributors: A guide to the payment of fees and expenses Date: June 2015 Version: 03 Review date: August 2015 GUIDANCE ON THE USE OF SOCIAL MEDIA TO ACTIVELY INVOLVE About this guidance This guidance provides examples of ways in which different types of social media are currently being used to involve the public in research, the DIVERSITY AND INCLUSION IN DEMENTIA RESEARCH 28 The Journal of Dementia Care September/October 2019 Vol 27 No 5 Arecent briefing paper by the British Psychological Society (2018) asserted that people from black, Asian and TURNING THE PYRAMID UPSIDE DOWN: EXAMPLES OF PUBLIC Turning the pyramid upside down: examples of public involvement in social care research October 2010 DIVERSITY AND INCLUSION PROJECT GROUP TERMS OF REFERENCE Diversity and Inclusion Working Group ToR V3 - 3 Professional members of the group will join with agreement of their organisation who will cover the resources needed to participate in meetings. BUILDING RESEARCH PARTNERSHIPS By Jack Nunn and Margaret Grayson. Building Research Partnerships is an internationally recognised way of working that has been developed by Macmillan, the National Institute for Health Research Cancer Research Network (NCRN, England), the Public Health Agency (Northern Ireland) and the National Institute for Social Care and Health Research Clinical Research Centre (Wales). SEARCH RESULTS FOR: CONTACT US All mental health day services have been asked to review their services and identify ways they can be improved. This research involved people with mental health problems and INVOLVING YOUNG PEOPLE IN RESEARCH (PDF) Published by the INVOLVE Support Unit September 2004 ISBN: 0-9541215-3-8 Ref: Kirby P. (2004) ‘A Guide to Actively Involving Young People in Research: For DIVERSITY AND INCLUSION IN DEMENTIA RESEARCH 28 The Journal of Dementia Care September/October 2019 Vol 27 No 5 Arecent briefing paper by the British Psychological Society (2018) asserted that people from black, Asian and 4401 INVOLVE EXPLORING IMPACT A4-116PP:INVOLVE EXPLORING 03 Contents page Foreword 04 Acknowledgements 06 Summary 07 1. Introduction 11 2. Methods 15 3. Context to the findings 21 4. Findings from the literature review 25 4.1 Impact on the research agenda 26 4.2 Impact on research design and delivery 30 4.3 Impact on research ethics 50 4.4 Impact on the public involved 53 4.5 Impact on researchers 64 4.6 Impact on research participants 69 VALUES, PRINCIPLES AND STANDARDS FOR PUBLIC INVOLVEMENT IN 3 1. Introduction This report was undertaken by INVOLVE to review what work had already been done on principles and standards for public involvement in NHS, public health and SUPPORTED BY THE STANDARDS DEVELOPMENT PARTNERSHIP 4 Definitions used in the Standards • Public: In these standards we refer to the ‘public ’ throughout. When we talk about the public this also includes; patients, service users, survivors, carers andfamily
BUDGETING FOR INVOLVEMENT Budgeting for involvement: Practical advice on budgeting for actively . involving the public in research studies . June 2013 SAMPLE WORKING GROUP DISCUSSION PAPERS Empowerment Working Group – discussion paper B Developing a guide for members of the public about receiving payments for involvement In the Operational Plan TURNING THE PYRAMID UPSIDE DOWN: EXAMPLES OF PUBLIC Turning the pyramid upside down: examples of public involvement in social care research October 2010 UK STANDARDS FOR PUBLIC INVOLVEMENT 2 UK Standards for Public Involvement in Research Introduction The National Institute for Health Research (NIHR), Chief Scientist Office (CSO) Scotland, Health and Care Research Wales, and the Public Health Agency Northern Ireland invites people to use CO-PRODUCTION IN ACTION 3 Key principles Sharing of power – the research is jointly owned and people work together to achieve a joint understanding Including all perspectives and skills – make sure the research team includes all those who can make a contribution Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance BRIEFING NOTES FOR RESEARCHERS: PUBLIC INVOLVEMENT IN NHS Briefing note two: What is public involvement in research? 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, PAYMENT FOR INVOLVEMENT www.invo.org.uk www.invo.org.uk 2 • It supports equity of power in research partnerships which involve the public and professionals. • Making payments to the INVOLVING YOUNG PEOPLE IN RESEARCH (PDF) Published by the INVOLVE Support Unit September 2004 ISBN: 0-9541215-3-8 Ref: Kirby P. (2004) ‘A Guide to Actively Involving Young People in Research: For GUIDE FOR PUBLIC CONTRIBUTORS ON CLAIMING FEES AND EXPENSES Central Commissioning Facility - Reward and recognition for public contributors: A guide to the payment of fees and expenses Date: June 2015 Version: 03 Review date: August 2015 DIVERSITY AND INCLUSION: WHAT’S IT ABOUT AND WHY IS IT 2. Why is it important to think about diversity and inclusion for active public involvement in research? The extent of public involvement in research TRAINING SEMINAR REPORT 2004 (PDF) Published by the INVOLVE Support Unit October 2004 ISBN: 0-9541215-4-6 Ref: Steel R. (2004) Training for Public Involvement in Research: Seminar Report 22nd April 2004, 89 Albert Embankment, London.INVOLVE 4401 INVOLVE EXPLORING IMPACT A4-116PP:INVOLVE EXPLORING 03 Contents page Foreword 04 Acknowledgements 06 Summary 07 1. Introduction 11 2. Methods 15 3. Context to the findings 21 4. Findings from the literature review 25 4.1 Impact on the research agenda 26 4.2 Impact on research design and delivery 30 4.3 Impact on research ethics 50 4.4 Impact on the public involved 53 4.5 Impact on researchers 64 4.6 Impact on research participants 69 DIVERSITY AND INCLUSION PROJECT GROUP TERMS OF REFERENCE Diversity and Inclusion Working Group ToR V3 - 3 Professional members of the group will join with agreement of their organisation who will cover the resources needed to participate in meetings. UK STANDARDS FOR PUBLIC INVOLVEMENT 2 UK Standards for Public Involvement in Research Introduction The National Institute for Health Research (NIHR), Chief Scientist Office (CSO) Scotland, Health and Care Research Wales, and the Public Health Agency Northern Ireland invites people to use CO-PRODUCTION IN ACTION 3 Key principles Sharing of power – the research is jointly owned and people work together to achieve a joint understanding Including all perspectives and skills – make sure the research team includes all those who can make a contribution Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance BRIEFING NOTES FOR RESEARCHERS: PUBLIC INVOLVEMENT IN NHS Briefing note two: What is public involvement in research? 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, PAYMENT FOR INVOLVEMENT www.invo.org.uk www.invo.org.uk 2 • It supports equity of power in research partnerships which involve the public and professionals. • Making payments to the INVOLVING YOUNG PEOPLE IN RESEARCH (PDF) Published by the INVOLVE Support Unit September 2004 ISBN: 0-9541215-3-8 Ref: Kirby P. (2004) ‘A Guide to Actively Involving Young People in Research: For GUIDE FOR PUBLIC CONTRIBUTORS ON CLAIMING FEES AND EXPENSES Central Commissioning Facility - Reward and recognition for public contributors: A guide to the payment of fees and expenses Date: June 2015 Version: 03 Review date: August 2015 DIVERSITY AND INCLUSION: WHAT’S IT ABOUT AND WHY IS IT 2. Why is it important to think about diversity and inclusion for active public involvement in research? The extent of public involvement in research TRAINING SEMINAR REPORT 2004 (PDF) Published by the INVOLVE Support Unit October 2004 ISBN: 0-9541215-4-6 Ref: Steel R. (2004) Training for Public Involvement in Research: Seminar Report 22nd April 2004, 89 Albert Embankment, London.INVOLVE 4401 INVOLVE EXPLORING IMPACT A4-116PP:INVOLVE EXPLORING 03 Contents page Foreword 04 Acknowledgements 06 Summary 07 1. Introduction 11 2. Methods 15 3. Context to the findings 21 4. Findings from the literature review 25 4.1 Impact on the research agenda 26 4.2 Impact on research design and delivery 30 4.3 Impact on research ethics 50 4.4 Impact on the public involved 53 4.5 Impact on researchers 64 4.6 Impact on research participants 69 DIVERSITY AND INCLUSION PROJECT GROUP TERMS OF REFERENCE Diversity and Inclusion Working Group ToR V3 - 3 Professional members of the group will join with agreement of their organisation who will cover the resources needed to participate in meetings. BUILDING RESEARCH PARTNERSHIPS By Jack Nunn and Margaret Grayson. Building Research Partnerships is an internationally recognised way of working that has been developed by Macmillan, the National Institute for Health Research Cancer Research Network (NCRN, England), the Public Health Agency (Northern Ireland) and the National Institute for Social Care and Health Research Clinical Research Centre (Wales). SEARCH RESULTS FOR: CONTACT US All mental health day services have been asked to review their services and identify ways they can be improved. This research involved people with mental health problems and VALUES, PRINCIPLES AND STANDARDS FOR PUBLIC INVOLVEMENT IN 3 1. Introduction This report was undertaken by INVOLVE to review what work had already been done on principles and standards for public involvement in NHS, public health and DIVERSITY AND INCLUSION IN DEMENTIA RESEARCH 28 The Journal of Dementia Care September/October 2019 Vol 27 No 5 Arecent briefing paper by the British Psychological Society (2018) asserted that people from black, Asian and GUIDANCE ON THE USE OF SOCIAL MEDIA TO ACTIVELY INVOLVE About this guidance This guidance provides examples of ways in which different types of social media are currently being used to involve the public in research, the DIVERSITY AND INCLUSION: WHAT’S IT ABOUT AND WHY IS IT 2. Why is it important to think about diversity and inclusion for active public involvement in research? The extent of public involvement in research 4401 INVOLVE EXPLORING IMPACT A4-116PP:INVOLVE EXPLORING 03 Contents page Foreword 04 Acknowledgements 06 Summary 07 1. Introduction 11 2. Methods 15 3. Context to the findings 21 4. Findings from the literature review 25 4.1 Impact on the research agenda 26 4.2 Impact on research design and delivery 30 4.3 Impact on research ethics 50 4.4 Impact on the public involved 53 4.5 Impact on researchers 64 4.6 Impact on research participants 69USER CONTROLLED
v Summary The aim and nature of this project User controlled research has been dev eloped by service users and their organisations as a new approach to undertaking research and evaluation. BUDGETING FOR INVOLVEMENT Budgeting for involvement: Practical advice on budgeting for actively . involving the public in research studies . June 2013 UPDATES ON WELFARE BENEFITS REGULATIONS 2 . continued.Permitted . work and PW1 forms – from January 2018 . Since April 2017 and a change in the legislation, the . higher. Permitted Work weeklyToggle navigation
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_______________________________________________________________________________________________________________________________ ******************************************************************************************************************************* SINCE INVOLVE DOESN’T EXIST ANYMORE AND WAS TAKEN OVER BY NIHR CENTRE FOR ENGAGEMENT AND DISSEMINATION IN APRIL 2020, THIS WEBSITE IS NO LONGER ACTIVELY UPDATED OR SUPPORTED ******************************************************************************************************************************* ________________________________________________________________________________________________________________________________ INVOLVE was established in 1996 and is part of, and funded by, the NATIONAL INSTITUTE FOR HEALTH RESEARCH , to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world. As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted anddisseminated.
The IMPACT of public involvement in NIHR health and social care research is defined as: “The changes, benefits and learning gained from the insights and experiences of patients, carers and the public when working in partnership with researchers and others involved in NIHRinitiatives”
SUPPORTING STATEMENT: By public involvement we mean research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them as defined by NIHR INVOLVE. NIHR’s commitment to reporting public involvement is to understand the influence involvement has on NIHR’s work and its key audiences, including the public, researchers, practitioners and funders as well as the wider benefits for health and social care provision.More about INVOLVE
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Read about the lessons from the INVOLVE/Research Design Service Reaching Out programme31 March, 2020
INVOLVE have just published some further guidance to help determine who might be involved in your research31 March, 2020
Please can you help with a survey of patient and public involvement (PPI) in randomised clinical trials?27 January, 2020
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What is public involvement in research? – if you are a member of the public interested to find out more there is information in resources for you. If you are a researcher look here to find out how to involve people in your research. We have many resources including briefing notes for researchers and libraries with references andexamples
* Find out more
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Find out the latest news on public involvement in research, sign up to receive regular email alerts and read our quarterly newsletter.* News items
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Interested in finding out about other organisations that support public involvement in your area? – visit invoDIRECT. People in Research is the place for you if you want to put up an opportunity for people to get involved in research or you want to find out what opportunities are available.* invoDIRECT
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