Regional working in east of England: co-designing a PPI feedback tool

Abstract

NIHR funding statement: “This is a summary of independent research funded by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care East of England (CLAHRC EoE) Programme.” NIHR disclaimer statement: “The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health” © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background The importance of feedback is highlighted in the ‘Values and Principles’[1] from INVOLVE and included in the current Public Involvement consultation on standards [2]. Patient and Public Involvement (PPI) contributors in the East of England (EoE) regional network flagged up the issue that feedback (from researchers to PPI contributors) was minimal or absent, so we co-designed a study to look at this. PPI contributors talked of spending valuable time commenting on complex issues and continue to volunteer without acknowledgement and thanks. The study aims to improve PPI feedback by co-designing a generic PPI Feedback process which can be adapted for individual PPI groups and activities. Methods The six regional PPI groups involved in the study include those based within the Research Design Service, Universities, hospitals and NHS Trusts. The study used a survey, interviews and 4 month audit. Over 100 respondents completed the survey distributed by the PPI groups and 23 PPI contributors, researchers and PPI leads were interviewed. Following two stakeholder meetings with researchers, PPI representatives and PPI group Leads, local feedback tools were co-designed, implemented and trialled in the PPI groups. A second audit was undertaken by PPI representatives and PPI group Leads to ascertain whether satisfaction with feedback had improved. Work is ongoing to identify barriers and facilitators to implementing the local tools and to co-develop the local tools to form a single regional EoE tool or process. Results The results confirmed the anecdotal evidence; feedback is not routine and very variable. Together, our research team (PPI contributors, leads, researchers) will outline our motivations for this research approach and our Feedback Tools. We will also discuss our results on the variation and frequency of feedback, barriers and enablers. Conclusion We aim to encourage other PPI groups to work together to improve feedback whilst underlining the importance of managing expectations and simultaneously nurturing relationships. A regional PPI Feedback tool or process is in development which we aim to produce and distribute in different user-formats. Acknowledgements: Funder: CLAHRC EoE. Study stakeholder and research group; PPI group Leads and PPI groups. *[email protected] References: 1. INVOLVE. Public involvement in research: values and principles framework. INVOLVE; Eastleigh. 2015. 2. https://sites.google.com/nihr.ac.uk/pi-standards/homePeer reviewe