Lived Experience Advisor Program initiative: harnessing consumer leadership for best care

Introduction

Over the past two decades, the role of consumers in Australian health care has evolved significantly. The National Safety and Quality Health Service Standards¹ set the benchmark of consumer engagement practices. Partnering with consumers ensures health services are actively integrating lived experience into governance, research, and improvement projects not only at the direct care level, but also at the service and systems level, to promote safe, high-quality health care.¹ This shift has been led by the mental health and alcohol and other drug (AOD) sectors.² Informal peer support roles have now become professionalised and integrated into mental health and AOD workforce capability frameworks that recognise their unique value in healthcare delivery and system improvement.^3,4 Across most other mainstream services, however, consumer involvement is predominantly volunteer based, focusing on co-designing projects and advisory roles.

In 2023, Western Health, one of Victoria’s largest public health services, implemented its Lived Experience Advisor Program (LEAP) as an innovative approach to embedding consumer voices throughout the organisation. The LEAP offers opportunities for health consumer advisors to expand beyond their volunteer roles to contribute to improved health literacy, culturally appropriate and safe care, and service navigation.⁵ Consumers are formally employed as part-time staff members on average 1 day per week. In contrast to a peer workforce, Lived Experience Advisors (LEA) across mainstream healthcare service areas are not involved in direct care but instead are focused on service and system level roles that inform healthcare planning, development, and evaluation, and ensure that the needs of its diverse community are addressed.

Purpose

The purpose of this case study is to describe the development and implementation of the LEAP at Western Health. The paper highlights how lived experience improves healthcare quality and safety and contributes to effective consumer engagement practice. Practical guidance is offered for other healthcare organisations that may wish to explore formalising the role of health consumer volunteers into members of an integrated lived experience workforce.

Background/context

Western Health is one of Victoria’s largest healthcare providers, serving a diverse and rapidly growing community of nearly one million people in Melbourne’s western suburbs. The organisation has over 12,500 staff across 11 campuses that provide hospital, community-based, in-reach, and custodial health services to aged, adult, paediatric, and newborn patients (https://www.westernhealth.org.au/AboutUs/Pages/default.aspx). Its catchment is characterised by cultural diversity, with over 40% of residents born overseas and many speaking languages other than English. This diversity also presents higher rates of chronic disease, mental health issues, and socioeconomic disadvantage that require innovative approaches to ensure culturally responsive and accessible healthcare services.

Western Health’s voluntary consumer advisor network exceeds 180 people. Consumers are involved in multiple engagement activities including committee membership, workshops and planning forums, research projects, and content review. The LEAP complements and enhances these existing consumer engagement structures by elevating consumer leadership and building co-design practice capability. Integrating LEAs into key decision-making processes and improvement initiatives ensures that consumer voices are not just heard but actively shape the design and delivery of services at Western Health.

Participants

LEAs are employed as staff members at Western Health. Selection is based on personal experiences of health conditions or using healthcare services either as a patient or carer. LEAs are recruited for a wide range of projects related to clinical health conditions and focused on cultural, gender and neurological diversity, and Aboriginal and Torres Strait Islander peoples.

All LEAs complete formal onboarding and induction, recognised with certificates of completion for workplace health and safety, cultural awareness, and other orientation training. Additional self-directed learning is provided to improve core capabilities such as project management, change management, and stakeholder engagement. To support the rapid expansion of the LEAP, LEAs are offered ongoing mentorship and support through a peer-based Community of Practice (CoP) through an online platform. The CoP facilitates project discussions and shared learning in a safe environment where LEAs can further develop their knowledge and skills. This informal training and education from peers and experts create sustainable career pathways in lived experience roles.

LEAP implementation

Outcomes

The diverse applications of lived experience across a range of projects demonstrates the influence LEAs have contributed across clinical, operational, and strategic domains of Western Health. The program has:

Challenges and constraints

Funding sustainability remains a significant obstacle, reflecting broader challenges in sustaining workforces across the healthcare sector. The reliance on grant funding and time-limited project budgets creates uncertainty for both Western Health and LEA staff.

Role clarity was another key challenge, particularly in the early stages of implementation, leading to confusion within the project team. Ongoing education, communication, and tools have improved understanding about how LEAs can co-deliver team projects. Examples include a specific LEA position description with clear accountabilities and co-developing LEA workplans to guide individual and team performance.

Thoughtful recruitment and role allocation processes are needed to match lived experience to project needs that will maximise program benefits. Careful consideration must also be given to recruiting LEAs for specific service areas or patient populations. Organisational readiness has varied across the health service with some departments requiring additional support to effectively integrate LEAs into teams.

Providing appropriate support for individual LEAs recognises the personal impact of sharing personal experiences within a professional context. Strategies to address this include regular debriefing and support through the CoP.

It has been difficult to evaluate the impact of the LEAP using formal outcome measures due to the diverse nature of projects and roles. Similar challenges have been identified in peers support workforce in mental health.⁶ The organisation is establishing a robust evaluation framework that can demonstrate the program’s impact on patient experiences and outcomes, staff attitudes, and organisational culture. We are currently undertaking a qualitative study to explore LEAs’ and stakeholders’ opinions about the program.

Discussion and lessons learned

Effective leadership at all organisational levels has been crucial, including clear executive sponsorship, comprehensive training, supportive policies, and regular evaluation. Ongoing support, including mentorship and professional development for LEAs, has also been essential. The CoP has fostered collaboration, reduced isolation, and created a strong lived experience workforce professional network. Early involvement of LEAs in project design has led to more responsive and sustainable initiatives, demonstrating benefits of genuine consumer involvement in healthcare improvement.⁷

The importance of diversity within the LEA workforce has become increasingly apparent, with Western Health recruiting more LEAs to reflect its diverse patient population. Flexibility in role design enables the organisation to tailor LEA positions to specific individual LEA needs. Flexibility also reflects the specific service needs and lived experience expertise that are most relevant to projects and clinical areas.

Clinical staff have gained new insights into patient experiences, leading to practice changes that are more person-centred. For example, in collaboration with LEAs, clinicians have developed resources to meet health literacy needs for youth and people with intellectual disability. The presence of LEAs has also encouraged other staff to reflect on, and share, their own lived experiences. This has contributed to a more open and supportive workplace where lived experience is driving transformative change in healthcare delivery and organisational culture.

Conclusion

By employing consumers as LEAs, Western Health has taken a significant step toward improving health care, addressing power imbalances, and ensuring that services are more inclusive and effective. The success of the LEAP serves as a powerful example of a non-clinical workforce model and how elevation of lived experience can transform health care. As the lived experience workforce in mainstream health services continue to evolve, initiatives such as the LEAP provide meaningfully ways to partner with consumers in healthcare improvement. Looking ahead, there are several areas requiring development to enhance the LEA program:

Ethics

This case study did not involve people, medical records, and human tissues. This manuscript describes the development and implementation of a program; hence, ethics approval was not required.