Citizen science in osteoarthritis research: a scoping review

Abstract

Background: Patient and stakeholder engagement (PSE) in research is increasingly recognized as essential to producing relevant, ethical, and impactful health studies. While PSE has advanced in many fields, its application in osteoarthritis (OA) research remains poorly defined. Objective: This scoping review aimed to map the landscape of patient engagement in OA research, identify existing models and frameworks, and assess their characteristics and implementation. Methods: Following the Arksey and O’Malley framework and PRISMA-ScR guidelines, a search was conducted across PubMed, Embase, CINAHL, Cochrane Library, and Web of Science (until March 2025). Eligible studies reported on active patient involvement—beyond participation—in OA research processes. Data extraction and synthesis were performed by independent reviewers. Results: Of 64 screened records, seven studies met inclusion criteria. These studies highlighted varying degrees of patient involvement, ranging from consultative roles to active co-production. Key enablers included early involvement, clear role definition, adequate training and compensation, and mutual trust. Reported benefits included improved study design, increased relevance and adherence, and enhanced dissemination. However, engagement remained inconsistent, particularly in translational research, and challenges persisted around inclusivity, resource allocation, and methodological standardization. Conclusions: PSE in OA research offers considerable promise but remains underutilized. Structured frameworks and institutional support are needed to move from tokenistic inclusion toward meaningful, equitable partnerships. Patient engagement can humanize research, reduce waste, and bridge the gap between scientific inquiry and lived experience, particularly crucial in chronic, heterogeneous conditions such as OA.