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Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews

Research output: Contribution to journalArticlepeer-review

Josephine Ocloo, Sara Garfield, Bryony Dean Franklin, Shoba Dawson

Original languageEnglish
Article number8
JournalHealth Research Policy and Systems
Volume19
Issue number1
Early online date20 Jan 2021
DOIs
Accepted/In press13 Oct 2020
E-pub ahead of print20 Jan 2021

Bibliographical note

Funding Information: This article represents independent research supported by the Centre for Implementation Science which is part of the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The research was also supported by the NIHR Imperial Patient Safety Translational Research Centre and the NIHR Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance at Imperial College in partnership with Public Health England. The views expressed are those of the author(s) and not necessarily those of the National Health Service, NIHR, Public Health England or the Department of Health and Social Care. Funding Information: This article represents independent research supported by the Centre for Implementation Science which is part of the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King?s College Hospital NHS Foundation Trust. The research was also supported by the NIHR?Imperial Patient Safety Translational Research Centre and the NIHR Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance at Imperial College in partnership with Public Health England. The views expressed are those of the author(s) and not necessarily those of the National Health Service, NIHR, Public Health England or the Department of Health and Social Care. Publisher Copyright: © 2021, The Author(s). Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

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Abstract

Background
The emergence of patient and public involvement (PPI) in healthcare in the UK can be traced as far back as the 1970s. More recently, campaigns by harmed patients have led to a renewed focus on strengthening PPI. There is a growing awareness of the benefits of PPI in research as well as a need to address power inequities and a lack of diversity and inclusion. This review was undertaken to look at evidence for theories, barriers and enablers in PPI across health, social care and patient safety that could be used to strengthen PPI and address a perceived knowledge and theory gap with PPI in patient safety.

Methods
We searched MEDLINE, EMBASE and PsycINFO from inception to August 2018, using both MeSH and free-text terms to identify published empirical literature. Protocols in PROSPERO were also searched to identify any systematic reviews in progress. The extracted information was analysed using a narrative approach, which synthesises data using a descriptive method.

Results
Forty-two reviews were identified and grouped by key outcomes. Twenty-two papers mentioned theory in some form, 31 mentioned equality and diversity (although with no theory mentioned in this area), and only 19 cited equality and diversity as a barrier or enabler. Thirty-four reviews identified barriers and enablers at different organisational levels: personal/individual; attitudes; health professional; roles and expectations; knowledge, information and communication; financing and resourcing; training; general support; recruitment and representation, PPI methods and working with communities and addressing power dynamics.

Conclusions
The review findings suggest that a commitment to PPI and partnership working is dependent on taking a whole system approach. This needs to consider the complex individual and organisational enablers and constraints to this process and address imbalances of power experienced by different groups. Addressing equality and diversity and use of a theory-driven approach to guide PPI are neglected areas. The long tradition of involvement across health and social care can provide considerable expertise in thinking about ways to strengthen approaches to PPI. This is especially important in patient safety, with a much newer tradition of developing PPI than other areas of healthcare.

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