Impact of Patient and Public Involvement (PPI): Completing the Feedback Cycle

East of EnglandGeneric Health Relevance
Start Date: 1 Apr 2016 End Date: 31 May 2018

Impact of Patient and Public Involvement (PPI): Completing the Feedback Cycle

Background

Patients and Public involvement (PPI) in research is defined as an active partnership between the public and researchers in the research process, rather than the use of people as ‘participants’ of research.  Service users / PPI representatives provide comments to researchers (on research proposals or documents) and researchers are encouraged to provide feedback to PPI representatives so that the PPI representatives know if their comments are worthwhile or useful.  Evidence indicates that this feedback is not routine and is very variable.

Aims

The research idea for this study was initiated by PPI representatives themselves. It aims to:

  • Determine the variation in types and extent of feedback given by researchers to PPI representatives in up to 6 PPI organisations in the East of England (EoE) region
  • Investigate the enablers and barriers to feedback and how such barriers could be overcome
  • Develop and test a co-produced and user-generated PPI feedback tool/prompt.

Participants and methods

Six established PPI groups across the EoE have expressed an interest to participate: six PPI leads, 227 PPI representatives and 316 researchers who have used the PPI groups in the past 18 months. PPI representatives will be recruited via their PPI organisation and are being asked about their experiences of PPI as members of the public not as patients.

The proposed research has 5 phases:

  1. an on-line survey questionnaire on the views and experiences of the PPI representatives in the groups and researchers
  2. interviews (telephone or face to face) with up to 6 PPI leads, 10 PPI representatives and 10 researchers (purposively selected to demonstrate a range of views)
  3. before audit of feedback within the 6 PPI groups
  4. development of Feedback prompt/tool (based on results of survey and interviews)
  5. after audit of feedback.   

Research questions:

1)      What are the facilitators and barriers in implementing a PPI feedback tool?

2)      What implementation strategies can be utilized to improve the implementation of a PPI feedback tool?

3)      What is the impact of involving users of the PPI feedback tool (PPI groups, PPI representatives, PPI leads & researchers) in the implementation research process?

Expected outputs of research / Impact and added value:

  • Regional co-produced PPI Feedback tool to be available for wider application
  • Regional networking/dissemination with PPI groups
  • Working with Research Design Service and INVOLVE to feed findings into guidance
  • Co-Presentation of findings at National INVOLVE conference 2017
Contact 
Dr Elspeth Mathie
e.j.mathie@herts.ac.uk