Services > Patient and Public Involvement > Publications

INVOLVE (formerly Consumers in NHS Research) aims to ensure that user involvement in R&D in the NHS, Public Health and Social Care improves the way that research is prioritised, commissioned, undertaken and disseminated. The Group has produced several publications which summarise their work to date.

The following documents are pdf files and will need to be opened with acrobat reader

 Training for Public Involvement in Research: Seminar Report (697k)
R. Steel, INVOLVE, October 2004 - 42 pages

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.


 A Guide to Actively Involving Young People in Research (588K)
For researchers, research commissioners, and managers.
Perpetua Kirby, September 2004 - 34 pages

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.


 Involving the public in NHS, public health, and social care research (598K)
Briefing Notes for Researchers.
2004 Second edition - 73 pages

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).


 Getting Involved in Research - a Guide for Consumers (797K)
2001- 55 pages

A guide for people who want to be actively involved in health research, not as 'subjects' but as consultants, partners and leaders in research commissioning and research work.

 

 Brief Summary for Involving Vulnerable and Marginalised People (96K)
Jan 2004 - 3 pages - (FULL CONSULTATION DOCUMENT BELOW)


 Full Consultation Document for Involving Marginalised and Vulnerable Groups in Research (211K)
Jan 2004 - 16 pages - (BRIEF SUMMARY ABOVE)


 A Guide to Paying Members of the Public Actively Involved in Research (133K)
August 2006 - 20 pages

This guide is a revision of a previous guide first published in February 2002.  The guide is intended primarily for the use of researchers and may also be useful for research commissioners.  It includes guidance on reimbursement of expenses and payments for time, skill and expertise

 

 Suggested guidance for grant applicants about involving the public in research (81K)
Buckland & Entwistle, 2000 - Updated 2004 - 3 pages

A brief document which aims to outline the type of information that should be provided by grant applicants about their plans to involve the public.  It also suggests some criteria by which public involvement could be assessed.

 

INVOLVE Seminar, Conference and Workshop Reports

 

 INVOLVE Conference Report 2004 (296kb)
March 2005 - 19 pages

An informal snapshot of the event based on the personal reflections of some of the people who were at the conference.

 

 Report of the Commissioning Workshop (366K)
July 2003 - 21 pages

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.


 Involving Consumers in Randomised Controlled Trials - Seminar report (73K)
December 2000 - 28 pages

A summary of the presentations and discussions of a seminar held on 11 December 2000.  The seminar was attended by consumers, researchers and others with an interest in the active involvement of consumers in randomised controlled trials (RCTs)

 

 Involving consumers? An exploration of consumer involvement in NHS R&D managed by Department of Health Regional Offices (161K)
Buckland & Gorin, 2001 - 65 pages

This study examined the nature and extent of consumer involvement in research activity managed by the Department of Health regional offices.

 

 January 2000 Conference report (190K)
January 2000 - 44 pages

Conference report for Consumers in NHS Research Conference held on Friday 28 January 2000


 

 Research & Development in the NHS. How can you make a difference? (76K)
October 1999 - 31 pages

Booklet written to make Research and Development in the NHS more accessible


 

 Involving consumers in commissioning health research Seminar report (48K)
September 2000 - 15 pages
Report of seminar held on 26 June 2000


Publications commissioned by INVOLVE

 

 Full report - Training for service user involvement in health and social care research: : A study of training provision and participants' experiences. (1489K)
(Lockey R, Sitzia J, Gillingam T, Millyard J, Miller C, Ahmed S, Beales A, Bennett C, Parfoot S, Sigrist G and Sigrist J) Worthing and Southlands Hospitals
NHS Trust 2004 - 162 pages


 Report Summary: Training for service user involvement in health and social care research: A study of training provision and participants' experiences. (80K)
(Lockey R, Sitzia J, Gillingham T, Millyard J, Miller C, Ahmed S, Beales A, Bennett C, Parfoot S, Sigrist G and Sigrist J. 2004). (4 pages)


 Capturing the experiences of those involved in the TRUE Project: a story of colliding worlds (383K)
A report to INVOLVE by Alison Faulkner, January 2004 - 27 pages


 RCT Scoping Study to explore the most appropriate way to produce and disseminate information on Randomised Controlled Trials - EXECUTIVE SUMMARY (20K)
Campbell M, Entwistle V, Langston A, & Skea Z, 2002 - 4 pages


 Small Voices, Big Noises. Lay involvement in health research: lessons from other fields - FULL REPORT (681K)
Baxter L, Thorne L, & Mitchell A, 2001 - 152 pages -  - the Executive Summary is below


 Small Voices, Big Noises. Lay involvement in health research: lessons from other fields - EXECUTIVE SUMMARY (47K)
Baxter L, Thorne L, & Mitchell A, 2001 - 4 pages -  - the full report is above


 Knowing How - a Guide to Getting Involved in Research by Folk.Us of Exeter University (753K)
Thorne L, Purtell R, & Baxter L -  September 2001 - 26 pages



Publications on INVOLVE

 

 INVOLVE Operational Plan 2007 - 2008 (104k)
July 2007 - 16 pages

 

 INVOLVE Strategic Plan 2003-2006: Creating the Expert Resource (249K)
July 2003 - 12 pages



 Working Partnerships (138K)
DOH Nov 2000 - 3rd Report - 22 pages



 Involvement Works (75K)
NHS Executive 1999 - 2nd Report - 23 pages



 Research: What’s in it for Consumers? (111K)
NHS Executive 1998 - 1st Report - 27 pages




Other recent and relevant publications regarding user involvement


User Involvement in research by nurses
RCN user involvement publication 2007 - April 2007, 12p

This guidance was developed by project group members from the health professions and was led by Tracey Williamson, RCN Research Society, Research Fellow in Older People/User Involvement, University of Salford. It provides answers to ten key questions which may help you to ensure meaningful user involvement in your research.


 Taking chances: the lifestyle and leisure risk of young people

A publication of the Child Accident Prevention Trust in association with researchers from the Universities of Newcastle upon Tyne, Northumbria and Huddersfield.

 Reward and Recognition:  The principles and practice of service user payment and reimbursement in health and social care.
Department of Health Publication 2006 - 44 pages

This guide aims to support local health and social care organisations with the principles and practice of reimbursing service users for their involvement.



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