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

New Guidance for Researchers: Feedback 2018

Patient and Public Involvement (PPI) in Research: Feedback from Researchers to PPI contributors
Download the guidance here Guidance for Researchers PPI Feedback 2018

If you would like more information, PPI Feedback Forms or help in implementing feedback to PPI contributors, please get in touch E.J.Mathie@herts.ac.uk
Please use the PPI Feedback Guidance but if you would like to use the forms or reproduce the document, please acknowledge the research and seek permission. 

The research project:

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 aimed 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 participated in the study. Collectively they represented six PPI leads, 227 PPI representatives and 316 researchers who have used the PPI groups in the past 18 months. PPI representatives were recruited via their PPI organisation and were asked about their experiences of PPI as members of the public not as patients.

The research had 5 stages:

  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  PPI leads,  PPI representatives and  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.   

In the first year of the project 5 co-produced (by PPI leads, researchers and PPI representatives) PPI Feedback Tools were developed.

This study ‘‘Completing the PPI Feedback Cycle Project (2016- 2017)’ was initially a CLAHRC EoE Development Grant, which started on 1 April 2016 for 12 months. It was extended for a further 12 months: ‘Completing the Feedback Cycle II: Implementation and evaluation of a regional PPI feedback tool (2017-2018)’.

This second phase of the study trialled and audited the Feedback tools in 5 different PPI organisations over the East of England.

Research questions in the second phase:

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?

Key findings, activities and outputs:

  • Regional co-produced PPI Feedback tool to be available for wider application – suggested prototype available in the Guidance for Researchers PPI Feedback (below).
  • 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

Publications:

The guidance for researchers is included in the National Public Involvement (PI) Standards Recommended Resources

News and blogs:

Press Release: “University of Hertfordshire Study Finds Health Researchers Are failing to Provide Feedback”

Health Services Journal (HSJ) Article: “Patient involvement in health research can be enhanced by regular feedback”

Times Higher Education (THE): “By not giving feedback to research volunteers, we risk losing valuable partners”

Research Fortnight: “Feedback failure undermines health research” 

Care Appointments: “University of Hertfordshire study finds health researchers are failing to provide feedback” 

Simon Denegri blog: “Hey Prof, we need to talk about feedback. It’s not about ‘closing the loop’ but learning together”

NIHR news: New recommendations launched to improve researchers feedback to patients and the public shaping studies 

Study newsletters:

Contact:

Twitter: #PPIFeedbackloop


 

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