Moving Beyond Visibility and the “Glass Box” Effect: A Scoping Review of Consumer Leadership in Healthcare

This scoping review was conducted to understand how consumer leadership is conceptualised and enacted across healthcare services, research, policy and education, and to synthesise reported enablers, barriers and impacts. It was guided by JBI methodology with consumers involved in design, analysis and interpretation. A comprehensive search strategy incorporating database-specific subject headings and keywords related to consumers (people with lived or living experience), leadership and healthcare domains was applied across five databases. The database search was supplemented by targeted grey literature searches. Reviewers screened titles, abstracts and full texts. -Included sources (1) reported consumer leadership in healthcare services, research, policy or education, (2) described leadership roles, activities or influence held by consumers, and (3) were published in peer-reviewed or grey literature. Sources reporting consumer involvement without leadership elements detailed, were excluded. Data extraction and synthesis: Data were extracted on source characteristics, terminology and definitions of consumer leadership, leadership roles and activities, and reported enablers, barriers and impacts. Findings were synthesised using descriptive mapping and qualitative thematic analysis, sensitised by a systems change lens. Barriers and enablers were coded across four domains, and impacts were mapped across individual, relational and system levels. The search yielded a total of 5,062 records, with 180 included. Consumer leadership was most frequently reported in healthcare services, with additional evidence spanning research, policy and education. Leadership roles were increasingly formalised and embedded over time, including through designated positions and remuneration. However, this structural progress co-existed with persistent relational and cultural barriers, particularly power asymmetries and the variable legitimacy afforded to consumers, which constrained their influence in decision-making. Reported impacts included service improvements, research agenda shifts, and increased consumer confidence and capability, but impact assessment was predominantly narrative, limiting comparability. A central paradox was identified: structural recognition and formal inclusion of consumer leadership have increased over time, yet relational and cultural conditions continue to limit influence. Interpreted through a systems change lens, explicit structural changes appear to have outpaced shifts in implicit assumptions, norms and power dynamics. We introduce the “glass box” effect to describe how consumer leaders may be highly visible and formally embedded yet remain constrained in their ability to enact change. Addressing this paradox requires aligning structural mechanisms with power redistribution, relational trust, cultural legitimacy and equitable involvement to move towards transformative conditions that support consumer leadership across the healthcare sector.