Evolution of Patient and Public Involvement and Engagement in Health-Related Research: A Concept Analysis

To clarify the definition and evolution of Patient and Public Involvement and Engagement (PPIE) and identify its attributes, antecedents, and consequences in health-related research.

This study follows Rodgers' evolutionary concept analysis with a seven-step framework.

Datasets were searched using terms related to PPIE and key categories (i.e., attributes, antecedents, and consequences). Data were sourced from CINAHL, PsycInfo, Scopus, PubMed, and Web of Science covering publications from inception to October 31, 2024. Document titles, abstracts, and keywords were manually screened to identify relevant studies for full-text review.

A total of 1751 documents were screened, resulting in 38 eligible studies included in the final analysis. PPIE has evolved from a narrow focus on patient inclusion and participation, where patients had minimal influence on research and researchers resisted sharing control of research, to a collaborative model emphasising sustained partnerships, shared contributions, equitable power distribution, and active involvement across research stages. This shift has been driven by research innovation, a growing emphasis on healthcare equity and patient-centred care, technological advances, and stakeholder advocacy (e.g., patients, funders, ethics committees). While PPIE enhances research relevance and impact, barriers, such as resource constraints, power imbalances, patient limited research capabilities and increased researcher workload persist. Facilitators, such as training programmes, standardised guidelines, flexible arrangements and transparent communication can enable meaningful partnerships.

The concept of PPIE is evolving toward greater clarity and consistency in research, positioning patients and the public as active, essential contributors rather than passive participants. Barriers and facilitators were identified to inform its utilisation in research.

This study clarifies the conceptual ambiguities of PPIE, informs theory development, and provides actionable insights. Healthcare and nursing researchers can draw on its findings to utilise PPIE to enhance collaborative and inclusive research practices that align with the needs of patients and the public.

This study adheres to the PRISMA (2020) reporting guidelines for systematic reviews.

One of our co-authors is a patient with lived experience of cancer, who contributed valuable comments and suggestions to enhance this paper.