INVOLVE Publications

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You can search for publications by browsing through All Publications or by viewing the relevant section. If you are looking for documents about INVOLVE or copies of our minutes, please visit the About INVOLVE Section.  If you would like to view copies of our newsletters please visit the News section.  Details of any consultations that INVOLVE has responded to can be found in INVOLVE documents.

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2011, November NEW A joint study published by the National Research Ethics Service (NRES) and INVOLVE looks at the extent and nature of reported public involvement in health and social care research. It analyses information routinely collected by NRES as part of the applications process for ethical approval of research projects. The study was based on a sample of applications submitted to NRES in 2010. The report : • provides a ‘snapshot’ of public involvement in research and identifies practical actions for funders, sponsors and regulators in ensuring and facilitating further patient and public involvement • provides some key insights into the extent to which patients and the public are involved in research, and the understanding of researchers and funders of effective involvement Reference: Tarpey M., (2011) Public involvement in research applications to the National Research Ethics Service, INVOLVE, Eastleigh. (M Tarpey, INVOLVE) Public involvement in research applications to the National Research Ethics Service (NRES) No. of pages: 24.  Filesize 468 kb

2011, September NEW In July 2011 we contacted patient and public involvement (PPI) leads and managers across the NIHR and asked them each to identify three key public involvement priorities that they thought would benefit from being supported nationally by INVOLVE or across the NIHR. This report highlights the key themes identified. INVOLVE survey of priorities for public involvement across the NIHR No. of pages: 19.  Filesize 492 kb

2011, March This guide is for you if you are thinking about getting actively involved in research (see section 1 for definitions of these terms) and you are being offered expenses and/or payment for your involvement. It offers answers to some frequently asked questions and suggests where you might get advice about your particular circumstances. This guide does not attempt to answer all of the questions you might have about being paid for involvement; it is a complex area and it would be difficult to cover everyone’s individual circumstances. We strongly advise you to get expert advice about your own personal financial circumstances before accepting payment for involvement in research. This is the second of two guides about payment for involvement published by INVOLVE. The other guide, which is aimed at researchers and research commissioners responsible for paying people for their involvement, contains more detail about some of the issues touched on here. See Payment for Involvement: a guide for making payments to members of the public actively involved in NHS, public health and social care research (INVOLVE, 2010). (Alison Faulkner)1 What you need to know about payment: an introductory guide for members of the public who are considering active involvement in NHS, public health or social care research No. of pages: 20.  Filesize 323 kb

2011, January This is the the submission on behalf of INVOLVE, to the Government’s inquiry on Universal Credit. (Universal Credit – Welfare that works. ) INVOLVE submission to the Department of Work and Pensions Select Committee inquiry - No. of pages: 4.  Filesize 129 kb

2010, December In March 2010 the Academy of Medical Sciences (AMS) was asked by the Department of Health to conduct an independent review of the regulation and governance of medical research. The review is chaired by Sir Michael Rawlins and is likely to report early in 2011. In the course of its inquiry the panel invited AMRC and INVOLVE to hold a workshop which would provide an insight into patient perspectives on the conduct of research and associated regulatory issues. It was agreed that the conclusions of the workshop would be fed into the review and that AMRC and INVOLVE would separately produce an independent report of the event. The workshop was held on Tuesday 2nd November 2010. The Association of Medical Research Charities (AMRC) and INVOLVE report on Patient perspectives on the regulation and governance of medical research December 2010 No. of pages: 13.  Filesize 420 kb

2010, October References on public involvement in NHS, public health and social care research (Compiled for INVOLVE by Kristina Staley of TwoCan Associates)3 invoNET Bibliography 3 No. of pages: 137.  Filesize 1068 kb

2010, October This report provides real-life examples of how service users have been involved in social care research.  (Researched and compiled by Hilary Blackburn, Bec Hanley and Kristina Staley from TwoCan Associates.)1 Turning the pyramid upside down: examples of public involvement in social care research No. of pages: 40.  Filesize 291 kb

2010, October Summary of the full report of the Changing our Worlds publication. The summary outlines the common themes, conclusions and key messages from the seven projects which are explored in the full report. Changing our worlds: examples of user controlled research in action - Summary No. of pages: 12.  Filesize 234 kb

2010, October This report is intended to increase the understanding and awareness of user-controlled research through exploring in-depth seven examples of research where service users or disabled people controlled the research process. The report provides a description of the seven examples and a summary of the role and value of the user-controlled research. A 12 page summary of the report and an easy read version of one the projects - Connect Works - are also available.  (This report was commissioned by INVOLVE and written by Alison Faulkner.)1 Changing Our Worlds:examples of user-controlled research in action No. of pages: 60.  Filesize 361 kb

2010, October Connect in the North have prepared an Easy Read version of their Project which is Example 3 in the full report. This is to make this information in the report available to as wide an audience as possible. More detailed information about the Project is available in the Changing Our Worlds: examples of user controlled research in action full report. (Connect in the North )1 Easy Read version of Connect Works the Connect in the North Project No. of pages: 12.  Filesize 464 kb

2010, September This is the report of a ‘think tank’ event jointly organised by the Association of Medical Research Charities (AMRC), the James Lind Alliance (JLA) and INVOLVE, with the support of the UK Clinical Research Collaboration. It brought together representatives from large and small research funding organisations, research commissioners and other groups and individuals with experience of patient and public involvement in research priority setting and commissioning. The purpose of the meeting was to reflect on progress and to consider the future development of patient and public involvement in research priority setting and commissioning processes. (Report of an event organised by the Association of Medical Research Charities, INVOLVE and the James Lind Alliance) Building on Success No. of pages: 30.  Filesize 1185 kb

2010, September This is the report of a workshop held in March 2010 with a diverse group of service users interested in health and social care research. The aim was to find out how more people can be actively involved in research, especially groups and people whose views are heard less often in wider society. This report details the ideas and perspectives from the 11 service user participants, summarises the discussion between the service user participants and INVOLVE and sets out the service user identified recommendations for future work to improve and expand the groups and people getting involved with research.  (Shaping Our Lives) Count us in! Involving everyone in health and social care - a report of a workshop run by Shaping Our Lives for INVOLVE No. of pages: 46.  Filesize 272 kb Count us in! summary PDF version No. of pages: 8.  Filesize 203 kb Count us in! full report PDF version No. of pages: 46.  Filesize 444 kb Count us in! summary Word version No. of pages: 8.  Filesize 143 kb

2010, May This guide is a revision of a previous guide last up-dated in 2006. It is intended primarily for use by researchers and research managers. It may also be useful for research commissioners. Included in the guide is a section on the general principles in relation to making payments and more detailed information about specific issues, intending to help researchers think about what they need to know and do to set out their policies and procedures in relation to payment and covering expenses. (INVOLVE (2010)) Payment for involvement: a guide to making payment to members of the public actively involved in NHS, public health and social care research No. of pages: 36.  Filesize 452 kb

2010, May invoNET is a network of people working to build evidence, knowledge and learning about public involvement in NHS, public health and social care research. invoNET workshops offer network members an opportunity to share information on building the knowledge and an evidence base for public involvement in research. The aim of this workshop was to provide an opportunity to network and share information on the impact of public involvement in research. (INVOLVE 2010) The impact debate: an invoNET workshop held on Wednesday 24th February 2010 at the King's Fund, London No. of pages: 16.

2010, May This report stems from a workshop held by INVOLVE in January 2010. It contains short descriptions of 12 examples of training and support for public involvement in research as well as a summary of what took place at the workshop. (Bec Hanley, TwoCan Associates) Examples of training and support for public involvement in research: Sharing innovative practice workshop No. of pages: 63.  Filesize 747 kb

2010, March INVOLVE's response to the 2nd REF Consultation sent in on 16th December 2009 No. of pages: 5.  Filesize 104 kb

2010, February This document lays out the internal policy and procedures for payments and expenses for members of the public involved with our work. The policy explains when and how payments will be made and expenses covered. These procedures are specific to INVOLVE and our organisation. Others may find the information in the policy useful in order to develop a policy relevant to their organisation. (INVOLVE) INVOLVE policy on payments and expenses for members of the public including INVOLVE Group members (February 2010) No. of pages: 24.  Filesize 146 kb

2010, January This report provides details of public involvement in the Research Design Services. The Research Design Services are funded by the National Institute for Health Research to help NHS researchers and those working with NHS partners to prepare grant applications for applied health or social care research. They will do this by providing expert advice and support on research design and methodology. By compiling this ‘map’ of their public involvement work, we hope to provide a comprehensive description of how the 10 Research Design Services plan to promote and support public involvement in research. It is helpful to see the full range of approaches to public involvement in research across the regional services. We hope this document will be of interest to the Research Design Services and other organisations concerned with public involvement in research.  (Lucy Simons, INVOLVE Coordinating Centre) Research Design services and Public Involvement: A national map No. of pages: 48.  Filesize 1767 kb

2010 INVOLVE Operational Plan 2011 - 2012 No. of pages: 12.  Filesize 170 kb

2009, November This new INVOLVE report was launched on Friday 6th November 2009 by Professor Dame Sally Davies, Director General of Research and Development at the Department of Health. This report explores the impact of public involvement through an in-depth review of published literature. It draws together a wealth of examples of how public involvement is conducted, and what difference it is making. But it also raises questions of the quality of the evidence for the impact of such involvement, revealing huge variation in how this is assessed and reported and highlighting difficulties in judging it or drawing general conclusions. However, although there is not a consistent approach to assessing impact, or describing it, the same benefits and costs are being consistently reported: - in clinical research it was found to be of particular value in ensuring acceptability of trials, and that participants felt them to be ethical, well-designed and have relevant outcome measures - public involvement was reported to help increase recruitment to all types of research - public involvement was reported to be of value in qualitative research Exploring Impact: Public involvement in NHS, public health and social care research Filesize 451 kb Exploring Impact Summary: Public involvement in NHS, public health and social care research No. of pages: 16.  Filesize 104 kb

2009, November This paper was produced on behalf of the National Institute for Health Research (NIHR) for the Senior Investigators Conference, November 2009. The document provides examples of how NIHR Senior Investigators have involved the public in their research. We selected examples from 31 Senior Investigators to illustrate the wide range of activities and different ways they are involving the public across all stages of the research process. Senior Investigators are selected by an international panel of judges through open competition and are chosen for the contributions they are making to research. As part of their application to become a Senior Investigator, they are asked how they have involved the public in their research. The information in this paper is taken (with their consent) from the information they provided in their applications. We believe that this document will be of interest to researchers, both to highlight the potential for greater public involvement amongst other researchers, as well as providing an understanding of why researchers are increasingly valuing public input.  (Sarah Buckland and Karen Postle, INVOLVE) Senior Investigators and Public Involvement No. of pages: 30.  Filesize 428 kb

2009, November This is a summary version of the INVOLVE report which was launched on Friday 6th November 2009 by Professor Dame Sally Davies, Director General of Research and Development at the Department of Health. Exploring Impact Summary: Public involvement in NHS, public health and social care research No. of pages: 16.  Filesize 104 kb

2009, October This document sets out the framework that has been agreed with the Department of Health for payments to members of the public who are involved with commissioning research with the NIHR research programmes. People in other settings may find it helpful when developing their own policies and procedures. (INVOLVE)First published August 2006, revised October 2009 National Institute for Health Research: Payment rates for public involvement No. of pages: 6.  Filesize 238 kb

2009, April This statement has been developed by the National Research Ethics Service (NRES) and INVOLVE to provide clarity and guidance on patient and public involvement in research and the requirements of research ethics review. The statement has been approved by the NRES Advisory Group on NHS Service Users and Ethical Review. Patient and public involvement in research and research ethics committee review – guidance developed by the National Research Ethics Service (NRES) and INVOLVE No. of pages: 3.  Filesize 118 kb

2009, April Final report of the INVOLVE Conference 2008 2008 INVOLVE Conference Report No. of pages: 28.  Filesize 274 kb

2009, February An A5 leaflet for researchers, research commissioners/funders, members of Research Ethics Committees and it may also be helpful for members of the public. (INVOLVE) Good practice in active public involvement in research No. of pages: 2.  Filesize 176 kb

2009, February This report documents the findings of a survey of lay members of Research Ethics Committees (REC). The survey was carried out by INVOLVE on behalf of the National Research Ethics Service (NRES) NHS Service Users and Ethical Review Advisory Group between September and November 2008. Survey of Lay Members of Research Ethics Committees (RECs) report No. of pages: 44.  Filesize 314 kb

2009, February References on public involvement in NHS, public health and social care research (Compiled for INVOLVE by Kristina Staley of TwoCan Associates)2 invoNET Bibliography 2 No. of pages: 105.  Filesize 460 kb

2008, November A report of the joint seminar by INVOLVE and ESRC National Centre for Research Methods. This one day seminar was for researchers, including user researchers, with an interest in public involvement in applied social science research. Social research and public involvement: colliding worlds?: Seminar report No. of pages: 28.  Filesize 446 kb

2008, November This leaflet was written by Judy Scott for a workshop held at INVOLVE’s National Conference ‘Public Involvement in Research: getting it right and making a difference’ on 12th November 2008. The benefit rules and systems listed in this leaflet have been confirmed or tested or occurred in actual situations with Jobcentre Plus and HMRC within 2007 and 2008. This leaflet is the copyright of Judy Scott and may only be reproduced if the copyright logo is included. (Judy Scott) Payment for involvement in research: helpful benefit rules and systems for avoiding benefit problems No. of pages: 6.  Filesize 66 kb

2007, March The Public Information pack (PIP) is made up of four booklets and is for members of the public who are interested in getting involved in NHS, public health and social care research. The booklets have been produced by INVOLVE with support and advice from members of the public to help us ensure we cover the kind of information people need, when first getting involved in research. The booklets are printed in colour with images so please do contact us for a hard copy or email pip@invo.org.uk  (INVOLVE 2007) The Public Information Pack (PIP) Booklet 1 No. of pages: 34.  Filesize 671 kb Booklet 2 Getting started No. of pages: 30.  Filesize 849 kb Booklet 3 Finding out more No. of pages: 37.  Filesize 278 kb Booklet 4 Jargon Buster No. of pages: 18.  Filesize 258 kb

2006, September A series of seven guidelines to help commissioners, researchers and the public to think about public involvement in research commissioning. (INVOLVE 2006) Commissioning Guidelines Filesize 638 kb Getting involved in research grant applications: guidelines for members of the public P1 (Updated June 2009) Filesize 638 kb Peer reviewing research proposals: guidelines for members of the public P2 Filesize 222 kb Being a member of a commissioning board:Guidelines for members of the public. P3 Filesize 155 kb Public involvement in research grant applications:guidelines for commissioners. C1 Filesize 212 kb Public involvement in peer reviewing research proposals: guidelines for commissioners. C2 Filesize 245 kb Public involvement on commissioning boards: guidelines for commissioners. C3 Filesize 181 kb Public involvement in research grant applications:guidelines for researchers. R1 Filesize 219 kb

2006, September Guideline providing information for members of the public interested in getting involved in peer review. This is one of a series of seven guidelines to help commissioners, researchers and the public to think about public involvement in research commissioning. (INVOLVE 2006) Peer reviewing research proposals: guidelines for members of the public.P2 No. of pages: 16.  Filesize 222 kb

2006, September This guideline is written for members of the public interested in being a member of a commissioning board. One of a series of seven guidelines to help commissioners, researchers and the public to think about public involvement in research commissioning. (INVOLVE 2006) Being a member of a commissioning board:Guidelines for members of the public. P3 No. of pages: 12.  Filesize 155 kb

2006, September This guideline is written for research commissioners interested in encouraging researchers to involve the public in research grant applications. Other guidelines in this series of seven are for members of the public and researchers. (INVOLVE 2006) Public involvement in research grant applications:guidelines for commissioners. C1 No. of pages: 12.  Filesize 212 kb

2006, September This guideline is written for research commissioners interested in involving the public in peer reviewing research proposals. It is one in a series of seven written to help commissioners, researchers and members of the public think about public involvement in research commissioning. (INVOLVE 2006) Public involvement in peer reviewing research proposals: guidelines for commissioners. C2 No. of pages: 12.  Filesize 245 kb

2006, September This guideline is for commissioners interested in involving members of the public on commissioning boards. Other guidelines in the series of seven are for researchers and members of the public. (INVOLVE 2006) Public involvement on commissioning boards: guidelines for commissioners. C3 No. of pages: 12.  Filesize 181 kb

2006, September This guideline is written for researchers interested in public involvement in research grant applications. There are other guidelines, in this series of seven, for research commissioners and members of the public. (INVOLVE 2006) Public involvement in research grant applications:guidelines for researchers. R1 No. of pages: 12.  Filesize 219 kb

2006, August This is an easy read summary of the report User Controlled Research: its meaning and potential.  (An easy read summary of a report about user controlled research by Michael Turner and Peter Beresford, 2005.) What User Controlled Research means, and what it can do. No. of pages: 14.  Filesize 579 kb

2006, July The paper looks at why people choose to get involved in research, and, in turn identify barriers that may prevent others getting involved. The paper discusses: What motivates people to get involved in research; Who gets involved and ways of involvement; What are the factors influencing motivation and How to support motivation  (Maryrose Tarpey INVOLVE Support Unit) Why people get involved in health and social care research: a working paper No. of pages: 27.  Filesize 126 kb

2005, November (Michael Turner and Peter Beresford Shaping Our Lives and the Centre for Citizen Participation, Brunel University 2005)Full Report User Controlled Research: its meanings and potential. Full Report No. of pages: 137.  Filesize 1208 kb

2005, July A summary of the full PC11 Report presenting the essence of the research and its findings. This is an evaluation of the impact of consumer (service user/carer) involvement in 11 research projects known collectively as the London Primary Care Studies Programme. All 11 studies were required to include service users/carers within the research project, training and support was also commissioned for everyone involved. The evaluation also considered the impact of this and any other training that took place among the 11 studies. Includes policy recommendations and recommendations for best practice.  (A Barnard, M Carter, N Britten, R Purtell, K Wyatt, A Ellis.) Summary of PC11 Report. An evaluation of consumer involvement in the London Primary Care Studies Programme No. of pages: 22.  Filesize 525 kb

2005, July User controlled research has been developed by service users and their organisations as a new approach to undertaking research and evaluation. The aim of this project was to find out more about the definition, nature, operation, problems and potential of user controlled research. It was carried out both through a literature review and through information provided directly by a wide range of service users and service user researchers in a series of individual interviews and group discussions. This Report provides the first in-depth discussion and analysis of user controlled research. The full report will be available on the website shortly. (Michael Turner and Peter Beresford Shaping Our Lives and the Centre for Citizen Participation, Brunel University, 2005. ) Report Summary User controlled Research. Its meanings and potential No. of pages: 11.  Filesize 238 kb Available in 20pt font

2005, March An informal snapshot of the event based on the personal reflections of some of the people who were at the conference. This version contains photos from the conference. (INVOLVE)Contains photos Conference Report 2004 No. of pages: 21.  Filesize 1226 kb Available in large font, 35 pages,1120 kb.

2005, March An informal snapshot of the event based on the personal reflections of some of the people who were at the conference. This version contains no photos. (INVOLVE)Without photos INVOLVE Conference Report 2004 No. of pages: 19.  Filesize 296 kb Available in large font,33 pages, 227 kb.

2004, October A report of a seminar held on April 22nd 2004 and organised by INVOLVE. At the seminar the TRUE Project who INVOLVE commissioned to look into training for public involvement in research, presented their findings. The seminar also involved a high level of delegate participation and this report documents the discussions and recommendations made at the seminar and reflections from the discussion groups. It also contains a summary of the key issues in relation to public involvement in research that were highlighted during the day. (R. Steel, INVOLVE) Training for Public Involvement in Research: Seminar Report No. of pages: 42.  Filesize 696 kb

2004, October EQUIP is a collaboration of trainers with expertise in a diverse range of health-related fields, all with a 'public involvement' focus. This report is on the training they provided to support consumers and researchers in 11 London Primary Care Projects from 2001-2004. They discuss the difficulties they faced as well as reporting on the training workshops they held and their approach to providing outreach to each of the 11 projects. (Linsey Hovard, Sally Crowe, Nain Hussain) Effectiveness and Quality in User Involvement Projects (EQUIP) Final Report No. of pages: 113.  Filesize 1843 kb

2004, September Developed with a group of young people and older adults who have been involved in research. The guide contains information on: the benefits of involving young people; when and how to involve young people; what are the power issues of involving young researchers.  (Perpetua Kirby) A Guide to Actively Involving Young People in Research:for researchers, research commissioners, and managers No. of pages: 34.  Filesize 566 kb

2004, April (Lockey R, Sitzia J, Gillingham T, Millyard J, Miller C, Ahmed S, Beales A, Bennett C, Parfoot S, Sigrist G and Sigrist J - Worthing and Southlands Hospitals NHS Trust ) Full report: Training for service user involvement in health and social care research - a study of training provision and participants' experiences. No. of pages: 162.  Filesize 1498 kb

2004, April Information sheet for researchers interested in involving the public in public health research. Includes information on who to involve and how to find the right people. (INVOLVE ) Getting started with involving the public in health research: an information sheet for researchers No. of pages: 2.  Filesize 101 kb

2004, March ((Lockey R, Sitzia J, Gillingham T, Millyard J, Miller C, Ahmed S, Beales A, Bennett C, Parfoot S, Sigrist G and Sigrist J.) Worthing and Southlands Hospitals NHS Trust) Report Summary: Training for service user involvement in health and social care research- a study of training provision and participants' experiences. No. of pages: 4.  Filesize 116 kb

2004, February This is an introductory document designed for researchers with no previous experience of involving members of the public as active partners in research. It is a revision of the first edition which was published in 2000 and includes the more recent work of INVOLVE in the Policy Research Programme (PRP). Involving the public in NHS, public health, and social care research: Briefing Notes for Researchers No. of pages: 73.  Filesize 596 kb This document is also available in large print ( 20 point font);161 pages, file size: 2.04 MB

2004, January Full consultation document also available Brief Summary for Involving Vulnerable and Marginalised People No. of pages: 3.  Filesize 98 kb

2004, January Full Consultation Document for Involving Marginalised and Vulnerable Groups in Research No. of pages: 16.  Filesize 225 kb

2004, January (A report to INVOLVE by Alison Faulkner) Capturing the experiences of those involved in the TRUE Project: a story of colliding worlds. No. of pages: 27.  Filesize 382 kb

2003, July This report is a summary of the presentations and discussions held on 2 July 2003, when invited members of the public, commissioners and researchers with experience of public involvement in the commissioning process attended a one day workshop. Report of the Commissioning Workshop No. of pages: 21.  Filesize 395 kb

2002, December Consumers in NHS Research commissioned this piece of work to identify the types of information that are important to potential trial participants and to appraise the ways in which that information could be provided. The assessment was to reflect the perspectives of: people who have recently been approached to take part in a trial, those actively looking to volunteer for a trial, consumer representatives, and the researchers who design and conduct such trials.  (Marion Campbell, Vikki Entwistle, Anne Langston, Zoe Skea, Health Services Research Unit, University of Aberdeen)Full document Scoping study to explore the most appropriate way to produce and disseminate information on the quality of randomised controlled trials for potential participants known as PACT(Participants' Assessment of Clinical Trials) No. of pages: 43.  Filesize 467 kb

2002 Consumers in NHS Research commissioned the Health Services Research Unit, University of Aberdeen to assess the types of information that are important to potential trial participants and appraise the ways in which that information could be provided. (Campbell M, Entwistle V, Langston A, & Skea Z)Executive summary RCT Scoping Study to explore the most appropriate way to produce and disseminate information on Randomised Controlled Trials for potential participants (PACT) No. of pages: 4.  Filesize 21 kb

2001, October The project was designed to investigate the extent and nature of the involvement of lay people in research in fields other thatn health, and to highlight lessons that can be transferred to health research. (Baxter L, Thorne L, & Mitchell A) Small Voices, Big Noises. Lay involvement in health research: lessons from other fields - FULL REPORT No. of pages: 152.  Filesize 679 kb

2001, September (Thorne L, Purtell R, & Baxter L,) Knowing How - a Guide to Getting Involved in Research by Folk.Us of Exeter University No. of pages: 26.  Filesize 756 kb

2001 (Baxter L, Thorne L, & Mitchell A) Small Voices, Big Noises. Lay involvement in health research: lessons from other fields - EXECUTIVE SUMMARY No. of pages: 4.  Filesize 46 kb

This new INVOLVE report was launched on Friday 6th November 2009 by Professor Dame Sally Davies, Director General of Research and Development at the Department of Health. This report explores the impact of public involvement through an in-depth review of published literature. Exploring Impact Summary: Public involvement in NHS, public health and social care research

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