Evaluating Process and Outcomes of Public Involvement in Applied Health and Social Care Research: A Rapid Systematic Review

Objective

Public Involvement (PI) in applied health and social care research has grown exponentially in the UK. This review aims to synthesise published UK evidence that evaluates the process and/or outcome(s) of PI in applied health and social care research to identify key contextual factors, effective strategies, outcomes and public partner experiences underpinning meaningful PI in research.

Methods

Following a pre-registered protocol, we systematically searched four databases and two key journals for studies conducted within the UK between January 2006 and July 2024. A team of public partners and researchers carried out independent dual screening and data extraction. Included studies were narratively synthesised via Framework Synthesis.

Results

Nineteen studies evaluated the PI process with a range of populations including National Health Service (NHS) users, carers, and low-income communities. No specific outcome evaluations were identified. Through their experience, public partners described important components of meaningful PI such as mutual respect and seeing and contributing to change, as well as some unintended harms of involvement. Harms related to ‘experiencing negative attitudes’, ‘emotional burden of involvement’, ‘frustration and disappointment’ and ‘further marginalisation’. Meaningful PI was underpinned by structural, organisational, interpersonal and individual factors; as well as practical and principle-based strategies of involvement. Both public partners and researchers reflected on a range of outcomes of meaningful PI including changes to the research process and longer term impacts on organisations, researchers and public partners.

Conclusions

PI in research must be facilitated at multiple levels to reduce unintended harm and encourage meaningful and impactful outcomes. Findings are summarised within a model which gives an overview of priorities for individual researchers, organisations and funders to ensure best practice is achievable. From a methodological perspective, researchers should prioritise robust, transparent and co-produced approaches to evaluating PI to increase knowledge in the field.

Patient and Public Involvement

A regional public advisory network provided insight on the relevance and acceptability of the review concept. Our core research team included three public partners. Public partners contributed to the development of the initial review protocol, abstract and full-text screening, reviewing findings and their interpretation and writing the final report.