Patient and Public Involvement

Introduction

In 2007, the RCN Research Society produced guidance on User Involvement to help people ensure meaningful user involvement in their research. Much has changed in the intervening 5 years, and the RCN Research Society are now of the opinion that there is much more literature out there to guide the researcher. As such, the 2007 RCN guidance has now been archived (May 2012), and instead, members are encouraged to access the following, free as an e-book to all RCN members.

Morrow, E., Boaz, A., Brearley, S., Ross, F.M. (2011), "Handbook of service user involvement in nursing and healthcare research", Wiley-Blackwell, Chichester, UK. 
[SYNOPSIS: This book fills an important niche in the market providing practical expert advice on service user (patients, carers and the public) involvement in nursing and healthcare research. An invaluable guide for anyone working or involved in nursing and healthcare research, this book provides a step-by-step guide to the principles and process of involvement, including understanding the rationale for involvement, designing involvement, working with service users, and evaluating what has been achieved.]
Website: Available free to download as an e-book to RCN members

Links

Involvement groups and organisations

Involvement training

INVOLVE: http://www.invo.org.uk/resource-centre/training-resource/
RDLearning: www.rdlearning.org.uk
NIHR RDS-NW Patient and public how-to guide: http://www.rds-nw.nihr.ac.uk/PI/how_to_guide.php  

Further resources

The NIHR Research Design Service for the North West have produced a comprehensive links and resources section for PPI

 

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Historical information about the 2007 RCN Research Society publication, User Involvement

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)

Publication

The guidance itself has now been archived (May 2012). If you would like a .PDF for historical research purposes, please email Dave O'Carroll. 

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

Historical literature

UK Clinical Research Collaboration Patient & Public Involvement Strategic Plan (2008 -11)
Website: http://www.ukcrc.org/patientsandpublic/ppi/ppistratplan.aspx