Lived Experience Participation Policy
| Policy name | ​​Lived Experience Participation Policy |
| Policy number | HRP022 |
| Date approved | 11 November 2024 |
| Approving body | Council |
| Responsible officer | CEO and Provost |
| Implementation officer | General Manager |
| Next review date | November 2027 |
| Related policies |
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| Related forms and documents |
1. Purpose of this policy
This policy sets out the Institute’s principles of lived experience participation which inform the work of all Institute employees and relevant stakeholders.
The Cairnmillar Institute (the Institute) recognises the value of engaging those with lived experience to enhance the quality and depth of its training, research and clinical practice.
The purpose of this policy is to ensure that everyone who is involved in lived experience participation processes is aware of their responsibilities.
2. Scope
2.1 This policy applies to all employees, independent practitioners, contractors, honorary appointments, advisors, students, volunteers, Academic Board members and Council.
2.2 This policy applies to lived experience participants.
2.3 This policy should be read in conjunction with the Institute’s other lived experience policies and procedures.
3. About Lived Experience Participation
3.1 The Institute is committed to understanding the needs and experiences of people with mental health problems and actively seeks opportunities for people with lived experience of mental health problems to influence, participate and co-produce in (i) leadership and governance, and (ii) planning, design, measurement and evaluation of its services (e.g., digital services) and practices.
3.2 Lived experience is defined as experience so significant that it has caused the individual to reassess and often change their lives, their future plans, and their view of themselves. This can be a direct personal experience or an experience supporting someone (carer, family member or support person) facing mental health challenges (Byrne & Wykes, 2020).
Lived experience may be considered current, ongoing, or recovered and may include experience of mental health challenges, service use, and periods of healing and personal recovery.
Lived expertise refers to using those experience in ways that are useful to other people.
Lived experience leadership refers to speaking up to influence community awareness, organisational culture, policy and politics; creating space, pathways and inclusion with others; and prompting and supporting change (Hodges, Leditsckhke, & Solonsch, 2023).
Note: The Institute acknowledges that there may be different terms used to describe lived experience or the groups that identify as having lived experience, including ‘consumers’, ‘ex-patients’, ‘survivors’ [of the system or of suicide], or people identifying as ‘mad’. The Institute’s definition is broad to include both personal experiences and experiences of supporting someone.
3.3 Lived experience work and advocacy is part of a broader emancipatory movement and discipline. The consumer-survivor movement has grown since the mid-20th century in Australia and globally, giving rise to many lived experience-led initiatives as well as lived experience participation opportunities within mainstream mental health systems. Similarly, distinct lived experience (consumer) perspective roles have been created within the mental health workforce, including as peer support workers, policy workers, designated lived experience researchers, consumer consultants, educators and supervisors. Lived expertise and lived experience leadership draws upon, is accountable to, and contributes to the evolution of, these broader movements, disciplines and histories.
3.4 Lived experience participation is undertaken through positions at the Institute where lived experience is a key criterion, regardless of the position type or setting.
3.5 Lived experience participation may be undertaken through:
- permanent positions (e.g., designated lived experience workforce advisory, governance committee or advisory group roles)
- temporary positions (e.g., people brought in to partner or consult on specific project work, broader policy advice, governance, or other operations of the Institute).
3.6 The Institute also has employees and stakeholders who are non-lived experience workers. These are people who do not have the requirement to disclose mental problems on their position description and who are not responsible to draw from their individual and broader lived experience community perspectives as their primary perspective. They may or may not have lived experience of mental illness.
4. Recruitment and Selection
4.1 Recruitment into lived experience positions will be made according to the Staff Recruitment and Selection Policy.
4.2 Job advertisements will seek to recruit people into lived experience positions where they are able to reflect their lived experience community.
4.3 Recruitment including job advertisements will seek to identify and recruit diverse employees who reflect their lived experience community.
4.4 In line with the Diversity, Equity and Inclusion Policy, the Institute will seek out people with lived experience and include those from communities disproportionally affected by mental health social barriers and disadvantage. These include, but are not limited to:
- Aboriginal and Torres Strait Islander peoples,
- people who have experienced coercive and compulsory mental health treatment
- people from varying religious, cultural/ethnic/racial, and or linguistic backgrounds,
- people diverse in gender, kinship, sex and sexuality,
- people with disabilities,
- children and young people,
- older people, and
- people from lower socioeconomic groups.
4.5 Position description key selection criteria will specify the need to work intentionally from the following lived experience perspectives as a person’s primary perspective:
4.5.1 Lived experience of mental problems
4.5.2 Personal experience of the public or private mental health systems and/or alcohol and other drugs (AOD) service system, and
4.5.2 Demonstrated commitment to promoting the voice of people with lived experience and understanding of contemporary lived experience practices and advocacy, including peer work models.
4.6 Position descriptions for lived experience participants will clearly articulate the role, responsibilities and relationships with other roles in the Institute. These roles will draw on the unique expertise that lived experience participants provide, the movement and disciplines that give rise to such opportunities, and the emancipatory aims that underpin collective lived experience work.
4.7 The Institute recognises that recruitment into lived experience positions may be more effective by use of non-traditional avenues to address power imbalances and to ensure safety and equity. Rather than requiring a curriculum vitae/resume and standard interview procedures, the Institute may consider other flexible and inclusive approaches, such as the use of informal interview processes.
5. Training and Development
5.1 The Institute will support lived experience participants to develop their skills, knowledge and awareness in areas relevant to their lived experience position and participation, which may include governance processes, planning, design, measurement and or evaluation activities, through activities including:
5.1.1 Providing a lived experience induction and orientation to their area of participation
5.1.2 Providing lived experience policies and procedures relevant to their role and responsibilities at the Institute
5.1.3 Offering opportunities for lived experience skill development including attending workshops, seminars, training sessions, mentoring and supervision, where appropriate and in line with the Staff Development Policy.
5.2 The Institute will involve lived experience participants in an advisory capacity or in delivering training including:
5.2.1 Convening focus groups or workshops to seek lived experience advice on critical induction, information, training materials, resources and strategies for training the workforce
5.2.2 Inviting lived experience participants to attend and review training sessions to ensure the training reflects lived experience needs and perspectives
5.2.3 Inviting lived experience participants to present on their experiences at training sessions for the workforce, or use video or audio recordings of personal stories from people with lived experience.
5.3 The Institute will support employees and relevant stakeholders to develop their skills, knowledge and awareness about lived experience participation:
5.3.1 Providing induction and orientation about working with lived experience participation
5.3.2 Providing lived experience policies and procedures relevant to roles and responsibilities at the Institute
5.3.3 Offering opportunities for skill development about working with lived experience participation including attending workshops, seminars, training sessions, mentoring and supervision, where appropriate and in line with the Staff Development Policy.
5.4 Workshops or training, which are co-developed and delivered by or with lived experience participants, will be made available to staff so they understand the roles of the lived experience workforce and what lived experience participation entails.
5.5 When lived experience accounts are used in training, lived experience participant information will be treated sensitively, and people will be supported to share their experiences and stories to the extent they feel comfortable.
5.6 The Institute will review lessons learned from lived experience participation feedback and complaints and incorporate this into workforce training.
5.7 The Institute will survey staff on training provided in partnership with lived experience participants and identify opportunities to improve the training.
6. Support
6.1 The Institute recognises lived experience participation is based on common experiences but also universal experiences such as discrimination, marginalisation, exclusion, feeling powerless and loss of identity, human rights and citizenship. It can be traumatic and draining for participants to remember and engage in these experiences.
6.2 The Institute will offer lived experience participants appropriate and relevant support, proportional to their level of participation including:
- Offering briefing and debriefing interviews to ensure specific needs are understood and supported
- Approaching lived experience participants to clarify what skills, training tools and supports are needed for their participation and what training the Institute can offer
- Ensuring lived experience participants have access to appropriate consumer lived experience perspective (or non-lived experience) supervision and networks
- Offering reasonable adjustments in the workplace for lived experience participants to support them in staying well and in dealing with any periods when they are unwell.
6.3 Senior leaders and managers will be supported through training, mentoring and support to understand lived experience participation and how to recruit for, lead and support lived experience participation.
6.4 Lived experience participation is independent from the processes of providing or receiving care and will not affect a person’s treatment.
7. Feedback
The Institute takes accountability for those with lived experience seriously. The Institute will partner with lived experience participants to incorporate their feedback, views and experiences into the areas in which they are participating, training and education for the workforce, and broader organisational systems.
9 Confidentiality
8.1 At the Institute, lived experience participation may be engaged at an Institute-wide level, a project level, or both.
8.2. The Institute supports best-practice in and encourages co-production and co-design when working with lived experience participants across all areas from governance to planning, design, measurement and evaluation of its services and practices.
8.3 Wellbeing, social and cultural needs of lived experience participants from diverse backgrounds are respected and integrated into the lived experience participation work design and practice.
8. Engagement
9.1 The Institute is committed to upholding its Diversity, Equity and Inclusion and Privacy Policies.
9.2 Consistent with these policies, there is no legal obligation for those with lived experience to disclose their disability/status when employed or volunteering with the Institute, except to the extent required by AHPRA, PACFA or other professional bodies.
9.3 The Institute respects the right of people with lived experience to choose the degree to which they disclose their diagnosis and history.
9.4 Information regarding the mental health of a person with lived experience can only be communicated with the current or prior approved permission from that person.
10. Intellectual Property
10.1 The intellectual property of lived experience participants may include personal stories, media, podcasts, videos, and written resources. The Institute will negotiate the terms and conditions of use prior to this intellectual property being used as part of the activity and/or being distributed. The terms and conditions could include:
- The requirement for the lived experience participant to be consulted on the final editing process to ensure integrity is not compromised during editing
- The lived experience participant having the right to withdraw material at any time
- Co-authorship for documents that are created together.
11. Renumeration
11.1 Remuneration and/or reimbursement will be offered to people with lived experience who are invited to participate in particular activities or selected to undertake specific roles.
11.2 Remuneration will be offered on a case-by-case basis with reference to the Remuneration and Benefits Policy.
12. References
Byrne, L. & Wykes, T., (2020). A role for lived experience mental health leadership in the age of Covid-19. Journal Mental Health, 29(3), 243-246. https://doi.org/10.1080/09638237.2020.1766002
Hodges, E., Leditschke, A., & Solonsch, L., (2023, July 25). The lived experience governance framework: Centering people, identity and human rights for the benefit of all. National Mental Health Consumer & Carer Forum. https://nmhccf.org.au/our-work/discussion-papers/the-lived-experience-governance-framework-centring-people-identity-and-human-rights-for-the-benefit-of-all