User involvement

Introduction

Welcome to the User Involvement pages of the RCN Research Society. These have been prepared to coincide with the launch of RCN Guidance on User Involvement in Research by Nurses at the RCN International Nursing Research conference in Dundee, May 2007. The guidance comprises a twelve-page booklet which provides answers to 10 key questions which may help you to ensure meaningful user involvement in your research.

These are:

What does user involvement mean?
Can user involvement contribute to research?
Is user involvement necessary?
What do I do if my research does not lend itself to user involvement?
How should I reimburse, reward or recognise users for their involvement?
Are there any ethical issues relating to user involvement?
What do users need to know?
How should I go about finding users to get involved?
How do I involve people from marginal or seldom heard groups?
Are there any challenges I should prepare for?
How will I know if my approach to involvement worked?
How can I find out more?

Our use of the term 'user involvement' draws on the INVOLVE (2004) definition

"An active partnership between the public and researchers in the research process, rather than the use of people as the 'subjects' of research. Active involvement may take the form of consultation, collaboration or user control. Many people define public involvement in research as doing research 'with' or 'by' the public, rather than 'to', 'about' or 'for' the public." (www.invo.org.uk)

We hope these web pages will complement the guidance and develop over time as a useful resource. We welcome your feedback on any aspect of the site or guidance document and encourage you to share ideas as to how we can develop it further. Let us know what you would like to see on the site or leave feedback by emailing Dave O'Carroll, email: david.ocarroll@rcn.org.uk, Subject Heading "User Involvement"

Publication

The guidance is available for download as well as being available in hard copy (for a small charge) from RCN Direct. Please quote publication code 003 140.

User Involvement (PDF, 1.3MB)
Contact: RCN Direct
Tel: 0845-772 6100

Developing the guidance

The project to develop RCN Guidance on User Involvement in Research by Nurses was led by Research Society Steering Committee member Tracey Williamson supported by a range of co-authors including nursing representatives from around the UK, a nursing journal editor, lay representatives, an RCN Policy Advisor and the Chief Executive of the NHS Centre for Public and Patient Involvement. Following an initial meeting in July 2006, several drafts were refined by email and a near final draft was shared with 'critical readers' towards the end of the project and revisions made prior to final publication.

Critical readers

Several critical readers volunteered to look at a draft of the guidance and critically comment about its content, style, messages and format. The critical readers were mostly members of the public. Details of the critical readers who wished to be acknowledged are given below.

Mollie Balfour, Cancer Care Research Centre, Patient and Carer Advisor
Dr David P. Britt, Lay Member North West Users Research Advisory Group
Bill Culbard, Cancer Care Research Centre, Patient and Carer Advisor
Elizabeth Forbat, Senior Research Fellow, University of Stirling
Chris Houston, Service User
Diana Robinson, Service User
Jane Taylor, Service User
John Sitzia, INVOLVE and Worthing and Southlands Hospitals NHS Trust

The role the critical readers played was a vital one. It was difficult to have a representative yet manageable-sized project group to develop the guidance although we tried to have nurse representatives from all four countries of the UK and adult and lay people who could speak from their perspective as an adult or young person. Critical readers enabled us to gain a wider range of views about the content of the guidance and whether we were getting the most important messages about user involvement in research across. If you would like to see some examples of the feedback we gained from our critical readers, see below.

On behalf of all members of the guidance project team, we would like to thank all our critical readers for their time and suggestions which were very useful.

Feedback from critical readers

Comments and suggestions by critical readers were very useful. Almost all were responded to by altering the draft guidance. Formatting issues were left for the publishers to decide on. Some suggestions for elaboration could not be fitted into the space available within the leaflet e.g. issues round power in relationships.

Examples include:

Informing users of possibilities for their involvement before joining a project
More emphasis on the value of users' contributions
Like the question format and non-patronising tone
Very relevant to avoid over-researching groups of users
Have a simpler less academic introduction
Care not to sound like involvement is more about gaining funding rather than the value users add
A bit wordy
Highlight most important reading and resources
More bullet points and less text
Put the references in the text
Users do more than support prioritising and agenda setting - they actually do it
Important to stress not to involve users too late
Yes to involvement in ALL stages of research
Expand section on research needing to be meaningful and not tokenistic
Always have at least two users for morale, continuity etc
Encourage introductions and name plates at meetings

Links

Involvement groups and organisations

Dementias and Neurodegenerative Diseases Research Network - DeNDRoN: www.dendron.org.uk
Diabetes Research Network:www.ukdrn.org
INVOLVE: www.invo.org.uk
Folk.us: www.projects.ex.ac.uk/folk.us/findex.htm
Multiple Sclerosis (MS) Society Research Network NHS Centre for Involvement: www.nhscentreforinvolvement.nhs.uk
People in Research at the UK Clinical Research Collaboration: www.peopleinresearch.org
North West Users Research Advisory Group:www.lancs.ac.uk
Shaping Our Lives: www.solnetwork.org.uk
Stroke Research Network: www.uksrn.ac.uk
SURGE - Service User Research Group England: www.ukmhrn.info/dnn

Involvement resources and publications

People in public health: lay summary, Centre for Health Promotion Research, Leeds Metropolitan University. A summary for the dissemination of accessible research-based information from the People in Public Health study. This study will support better engagement with citizens to co-produce better health and well-being outcomes.
Website: http://www.leedsmet.ac.uk/health/piph/news.htm
Invest in Engagement. Funded by the Department of Health, the website offers a comprehensive review of the best worldwide evidence, in English, of what works to engage patients and the public in healthcare. This site will help healthcare commissioners and providers in England to deliver higher quality, more efficient care and treatment, which: *empowers patients with greater knowledge; *gives patients a better experience; *makes the best use of healthcare resources, and *contributes to improved health behaviours and better health.
Website: http://www.investinengagement.info/
Patient and Public How to Guide - NIHR Research Design Service for the North West. The guide information is aimed at researchers involved in NHS research and their collaborators in the university sector. It is designed especially to help those applying or thinking of applying for NHS research funding. Research managers, service users and the wider public may also find the information useful. We would like to thank Dr Sue Hinder (RaFT Consulting) and Dr Tracey Williamson (RDS Adviser University of Salford) for their significant input in producing the content of the guide and their feedback which was valuable in producing the online version. Please have a look and hope you find it useful. We welcome any feedback on its usefulness and we plan to revise the guide overtime in response to comments and suggestions.
Website: http://www.rds-nw.nihr.ac.uk/PI/how_to_guide.php
DIPEx has created two websites of people's experiences of almost 50 different illnesses and health conditions. The websites are aimed at patients, their carers, family and friends, doctors, nurses and other health professionals and are based on in-depth qualitative research carried out by the DIPEx Health Experiences Research Group at the University of Oxford
Website: http://www.healthtalkonline.org/ and http://www.youthhealthtalk.org
INVOLVE:
Website: http://www.invo.org.uk/Publications.asp
SURGE (2005) Guidance for good practice: Service user involvement in the UK Mental Health Research Network:
Website: www.ukmhrn.info/dnn/
NIHR Clinical Research Collaboration (NIHR CRC) Patient and Public Involvement Strategic Plan 2008 -2011
In April 2008, the NIHR CRC Board approved a three-year strategic plan to provide a framework for the NIHR CRC's future patient and public involvement activities. A NIHR CRC Board Subgroup for Patient and Public Involvement has been established to oversee its implementation.
Website: http://www.ukcrc.org/patientsandpublic/ppi/ppistratplan.aspx