Developing and evaluating guidelines for patient and public involvement (PPI) in research

Pollard, Katherine; Donskoy, Anne Laure; Moule, Pam; Donald, Christine; Lima, Michelle; Rice, Cathy

Abstract

© Emerald Group Publishing Limited Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

• Journal Article Type: Article
• Publication Date: Jan 1, 2015
• Deposit Date: Oct 30, 2014
• Publicly Available Date: Nov 15, 2016
• Journal: International Journal of Health Care Quality Assurance
• Print ISSN: 0952-6862
• Publisher: Emerald
• Peer Reviewed: Peer Reviewed
• Volume: 28
• Issue: 2
• Pages: 141-155
• DOI: https://doi.org/10.1108/IJHCQA-01-2014-0001
• Keywords: patient and public involvement
• Public URL: https://uwe-repository.worktribe.com/output/839114
• Publisher URL: http://dx.doi.org/10.1108/IJHCQA-01-2014-0001
• Additional Information: Additional Information : This article is (c) Emerald Group Publishing and permission has been granted for this version to appear here (http://eprints.uwe.ac.uk/24229/). Emerald does not grant permission for this article to be further copied/distributed or hosted elsewhere without the express permission from Emerald Group Publishing Limited.
• Contract Date: Nov 15, 2016