Being 'The Only Consumer' - Exploring the Lived Experiences of Health Consumer Representatives in Australian Health System Involvement.

INTRODUCTION: Health consumer representatives (HCRs) are increasingly expected to contribute to decision-making across the health system, including at the level of policy, strategy and system-wide governance. However, while HCR involvement is relatively well established at the direct-care and health service-level context, system level involvement remains underdeveloped and poorly understood as a distinct form of participation. In addition, and arguably because of this, HCR involvement at this level continues to face the persistent challenges, such as role confusion and tokenistic 'tick-a-box' engagement, despite increasing policy commitments. This study explores the lived experiences of HCRs in Australia to better understand how system-level involvement is experienced in practice.

METHODS: Thirteen HCRs from across Australia were purposively sampled and participated in semi-structured one-to-one interviews conducted via Zoom or telephone. Interviews were audio-recorded, transcribed and analysed iteratively using an interpretive phenomenological approach.

RESULTS: Participants' experiences were captured by the prominent theme of being the 'only consumer', reflecting both the uniqueness of their role and expertise, but also the feeling of marginalisation they face. Two cross-cutting influences shaped this experience: power dynamics, including structural and interpersonal inequities and relational factors, particularly allyship and supportive relationships. One key element of the consumer experience was the process of becoming an expert as they gained knowledge of systems and confidence in the value of the consumer perspective. Another was finding meaning in their work both through everyday interactions and long-term contributions to systems change.

CONCLUSION: The quality of HCR involvement in system-level spaces is shaped not only by governance structures, organisational processes and policy commitments, but also by power dynamics, relationships and the extent to which lived experience is recognised as unique expertise. Underpinning this, the ability for HCRs to find meaning in their roles and in genuine partnerships is what moves their involvement beyond tokenism into supported and valued participation. These findings highlight that meaningful system-level HCR involvement depends not only on having consumers 'in the room', but on recognising their expertise, sharing power, building respectful relationships, and designing structures that allow their contributions to influence decisions.

PATIENT OR PUBLIC CONTRIBUTION: Investigator HF holds the dual role of researcher and HCR peak body worker and has personal lived experience of being an HCR at the health-system level. The inception of the research question was grounded in this lived experience and informed by regular input from two highly experienced HCR peers. Study participants contributed to refining themes and the interpretation of data. Importantly, the central objective of the research was to elevate the insights, reflections, and lived experiences of HCRs.