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Consumer and Stakeholder Perspectives About the Lived Experience Advisor Programme: A Qualitative Descriptive Study
Rebecca Barbara1, Rohan Vaughan1, Joanna Petrunic1
1Western Health, St Albans, Victoria, Australia.
Background:
The Lived Experience Advisor Program (LEAP) was introduced as a new approach to consumer engagement within a large healthcare organisation. The programme was designed to professionalise and embed lived experience as a recognised form of expertise within organisational decision-making, research, and quality improvement through formal paid employment.
Objectives:
The aim of this study was to explore Lived Experience Advisor and stakeholder perspectives about the LEAP.
Methods:
A qualitative descriptive study was conducted within the metropolitan health service in which the programme was initiated. Data was collected through audio-recorded, individual, semi-structured interviews from May to June 2025. Data analysis was undertaken using a thematic content analysis approach.
Study Participants:
Consumers employed as Lived Experience Advisors (n = 7) within the study organisation, and stakeholders who utilised the LEAP (n = 7), participated in this study.
Results:
Fourteen individuals participated. Since inception, Lived Experience Advisors have contributed to projects in youth health services, carer support, emergency care, and development of consumer engagement strategies. Three major themes emerged: (1) preparation for the lived experience advisor role, (2) valued contributions to organisational projects, and (3) restrictions on role influence. Comprehensive orientation and training are integral to the successful integration of Lived Experience Advisors as health service employees. Role clarity could be strengthened across the organisation. Participants described the value of organisational commitment to build consumership, with tangible benefits for various projects and individual growth. Components of the LEAP could be modified to maximise influential opportunities for Lived Experience Advisors.
Discussion:
Employment of Lived Experience Advisors within the healthcare organisation across a range of clinical and operational projects has enhanced service planning and health literacy for diverse communities. Building a community of practice is needed to strengthen mentorship and professional development needs for Lived Experience Advisors.
Conclusions:
The contribution of consumership to healthcare has been realised through implementation of the LEAP. Consideration is needed regarding working conditions to sustain retention and promote career progression.
Patient Or Public Contribution:
Consumers who were employed as Lived Experience Advisors within the study organisation provided valuable feedback regarding the study design. They were also invited to participate in the study.
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