What is known about consumer leadership across healthcare services, research, policy and education? A scoping review to inform change beyond visibility and the ‘glass box’ effect
7 affiliations
- 1Collaborative Practice Centre, The University of Melbourne Faculty of Medicine Dentistry and Health Sciences, Melbourne, Victoria, Australia
- 2Consumers Leading Transformational Change in the Cancer Sector: A State-wide initiative, Melbourne, Victoria, Australia
- 3Violet Vines Marshman Centre for Rural Health Research, La Trobe University Rural Health School, Bendigo, Victoria, Australia
- 4Victorian Comprehensive Cancer Centre (VCCC) Alliance, Melbourne, Victoria, Australia
- 5Cancer Council Victoria, Melbourne, Victoria, Australia
- 6Regional Trials Network, Albury-Wodonga, Victoria, Australia
- 7Department of Medical Education and Collaborative Practice Centre, University of Melbourne, Melbourne, Victoria, Australia
Abstract
Objective: To map how consumer leadership is conceptualised and enacted across healthcare services, research, policy and education and synthesise reported enablers, barriers and impacts. This review was conducted using a consumer-led research methodology, with consumers involved in design, analysis and interpretation.
Design: Scoping review.
Data sources: Joanna Briggs Institute methodology guided this scoping review. 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 developed. MEDLINE, Embase, CINAHL, Academic Search Complete, PsycINFO and ERIC were searched from inception to October 2025. Database searching was supplemented by targeted grey literature searches.
Study selection: 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.
Results: The search yielded a total of 5062 records, with 177 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; however, impact assessment was predominantly narrative, limiting comparability.
Conclusions: 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.
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BibTeX
@article{paxino2026what,
title = {{What is known about consumer leadership across healthcare services, research, policy and education? A scoping review to inform change beyond visibility and the ‘glass box’ effect}},
author = {Julia Paxino and Natalie Maxwell-Davis and Naveena Nekkalapudi and Janne Williams and Randall Adison and Peter Gourlay and Paul Harrison and Tracey Bilson and Charlotte Denniston and Fiona Dangerfield and Sophy Athan and Kathleen Wilkins and Harry Thomas and Steve J Cavill and John Asgari and Melissa Sheldon and Pauline Ryan and Amanda Piper and Suiyin Cheah and Michelle Barrett and Stacey Panozzo and Joanne M Britto and Walter Eppich},
journal = {BMJ Open},
year = {2026},
month = nov,
doi = {10.1136/bmjopen-2026-120604},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-120604},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - What is known about consumer leadership across healthcare services, research, policy and education? A scoping review to inform change beyond visibility and the ‘glass box’ effect
AU - Julia Paxino
AU - Natalie Maxwell-Davis
AU - Naveena Nekkalapudi
AU - Janne Williams
AU - Randall Adison
AU - Peter Gourlay
AU - Paul Harrison
AU - Tracey Bilson
AU - Charlotte Denniston
AU - Fiona Dangerfield
AU - Sophy Athan
AU - Kathleen Wilkins
AU - Harry Thomas
AU - Steve J Cavill
AU - John Asgari
AU - Melissa Sheldon
AU - Pauline Ryan
AU - Amanda Piper
AU - Suiyin Cheah
AU - Michelle Barrett
AU - Stacey Panozzo
AU - Joanne M Britto
AU - Walter Eppich
PY - 2026
DA - 2026/11/04
JO - BMJ Open
DO - 10.1136/bmjopen-2026-120604
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-120604
AB - Objective: To map how consumer leadership is conceptualised and enacted across healthcare services, research, policy and education and synthesise reported enablers, barriers and impacts. This review was conducted using a consumer-led research methodology, with consumers involved in design, analysis and interpretation. Design: Scoping review. Data sources: Joanna Briggs Institute methodology guided this scoping review. 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 developed. MEDLINE, Embase, CINAHL, Academic Search Complete, PsycINFO and ERIC were searched from inception to October 2025. Database searching was supplemented by targeted grey literature searches. Study selection: 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. Results: The search yielded a total of 5062 records, with 177 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; however, impact assessment was predominantly narrative, limiting comparability. Conclusions: 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.
SN - 2044-6055
SN - 2044-6055
ER -