Structured patient and public involvement programme development in low- and middle-income country health research: a scoping review of evidence gaps and a framework for future practice.

Abstract

Patient and public involvement (PPI) is well established in high-income countries (HICs). However, evidence on the existence of structured PPI programmes, including their training, implementation, coordination and assessment in low- and middle-income countries (LMICs) is sparse. Understanding how PPI is developed and supported in these settings is essential for strengthening equity, relevance, and accountability in global health research. We aimed to map existing evidence on the development, implementation, and evaluation of structured PPI programmes in LMIC health research and to identify gaps to inform future programme development. We conducted a scoping review guided by Joanna Briggs Institute methodology and reported the review using PRISM-ScR. We searched four databases; PubMed, Scopus, Web of Science, and CINAHL, for studies published between 2013 and 2023, and updated the search to May 2025. Studies were included if they described a structured PPI programme embedded within health research in LMICs. Data extraction focused on programme development, training, implementation, evaluation, and reporting using GRIPP2-SF. Data from excluded studies were synthesised to characterise broader involvement practices. Among the 13,875 studies retrieved, 483 were considered for full-text screening, of which only 68 were LMIC-based. Only one study, the SENSE-Cog Asia dementia programme, satisfied the inclusion criteria. This multisite initiative demonstrated that structured PPI is feasible in LMICs when supported by cultural adaptation, PPI coordinator roles, and tailored training for contributors and researchers. Most LMIC full-text articles that were excluded described community engagement, consultation, or participatory methods rather than a structured PPI programme. Common limitations included hierarchical decision-making cultures, limited awareness of PPI, literacy barriers, digital exclusion, and absent reimbursement or institutional systems to support sustained involvement. Structured PPI programmes are lacking in LMIC health research. Although engagement activities are active and diverse, they often lack the infrastructure required for sustained partnership-based involvement. We propose an LMIC PPI Programme Development Framework comprising five essential components: foundational training, programme infrastructure, culturally grounded development, involvement across the research cycle, and monitoring and evaluation. Strengthening PPI in LMICs will require investment, cultural adaptation, and systems-level support to advance more equitable global health research.