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

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.

Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

“…These challenges were recognised by our co-researchers and also within the wider literature [ 53 ]. Although it remains the case that it is less common for researchers to report the challenges of PPI in research, or the wider systems within which it operates [ 54 ].…”

Co-designing New Tools for Collecting, Analysing and Presenting Patient Experience Data in NHS Services: Working in Partnership With Patients and Carers

“…Our PPIE collaborators made valuable contributions to, and provided insights into, each work package, enabling us to develop recommendations for delivering future PPIE work. Issues to be considered in future PPIE activities described by the group included: retention of PPIE contributors; diversity; inclusion; choice of language; and measuring fear, or the stigma of becoming involved in PPIE activities(18,19,(69)(70)(71). We recommend linking to external organisations who embed PPIE work at the heart of research, such as the NIHR (3), and the National Co-ordinating Centre for Public Engagement (NCCPE: (72)), where guidance is kept current, to encourage a culture of fair, equitable and meaningful involvement.…”

Approaches to optimize patient and family engagement in hospital planning and improvement: Qualitative interviews

“…Prior research that referred to PE largely focused on engaging individuals in their own clinical care or as members of research teams 16,17 . Other research on PE in health‐care organizations was conducted in the primary care context, revealing numerous barriers 4‐6 . Little prior research examined organizational PE in hospitals.…”

“…Another systematic review (11 studies 2003‐2012) found that patients were typically consulted after decisions had been made, which did not lead to improvements 5 . More recently, a systematic review of 42 reviews (up to 2018) identified numerous organizational barriers of PE: knowledge, attitudes, expectations, communication, financing, resourcing, training, patient/family recruitment and representation, and addressing power dynamics 6 …”

“…While PE is needed in all sectors, data on approaches in the hospital sector remain limited 4‐6 . Hospitals provide inpatient, outpatient and emergency services, and account for the largest share of health spending in many countries 9 .…”