Abstract
BackgroundThe 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.MethodsWe 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.ResultsForty-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.ConclusionsThe 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.
Highlights
The importance of involving patients, service users, carers and the public in the UK in health and social care and research has grown significantly in recent decades [1,2,3,4]
In the United Kingdom, a commitment to patient and public involvement (PPI) in healthcare is enshrined in key legislation
This is covered by the Health and Social Care Act [15], the NHS Constitution [16] and the duty by NHS England (s13Q of the National Health Service Act 2006 as amended by the Health and Social Care Act 2012), to properly involve patients and the public in its commissioning processes and decisions
Summary
The importance of involving patients, service users, carers and the public in the UK in health and social care and research has grown significantly in recent decades [1,2,3,4]. The idea of partnership working with patients and the public has gained more prominence as a result of serious clinical and service failings in the UK [10, 11] and internationally [12,13,14] These initiatives have often been driven by the campaigns of patients who have experienced harm and their relatives, leading to a new focus on PPI and its importance in improving quality and safety within healthcare. The Equality Act 2010 prohibits discrimination in public services on the basis of nine protected characteristics (age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief sex, sexual orientation) This legislation can be used to encourage more inclusive involvement processes.
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