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Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review
Signe Nissen1, Anne Wettergren Karlsson2, Birgitte Nørgaard3
1Hospital Lillebaelt, Region of Southern Denmark, Vejle, Denmark.
Background:
Patient and public involvement (PPI) is crucial for aligning research with public needs, reducing research waste, and enhancing the relevance and quality of evidence. Evaluating PPI is necessary to ensure its effectiveness. However, despite its recognised importance, researchers have reported a lack of robust tools for evaluating PPI systematically. To clarify which tools are used to evaluate PPI in health research, we conducted a scoping review.
Objective:
We aimed to identify and map evaluation tools that have been used in empirical health research studies to assess PPI, and to describe reported outcomes related to PPI.
Methods:
A scoping review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. A comprehensive search was undertaken in MEDLINE, Embase, CINAHL and Scopus to identify studies published between 2021 and 2024 describing evaluation tools for PPI in health research contexts. Studies evaluating PPI were included, irrespectively of tool validation. Study selection and data charting were guided by principles from structured extraction frameworks and results were synthesised descriptively and narratively.
Results:
Thirty studies were included. Positive personal outcomes for PPI partners were reported, including increased well-being and skill development. Despite the existence of robust validated evaluation tools, many were adapted or developed de novo. An 'us vs them' dynamic was noted, reflecting differing engagement levels between PPI partners and researchers during evaluations. The need for additional training for both PPI partners and researchers to enhance collaboration was a recurring theme.
Conclusions:
Patient and public involvement evaluation tools are often developed or adapted to fit specific contexts, with multiple methods used for assessment. Challenges include low researcher response rates in evaluations and the need for better researcher preparedness for PPI.
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