The Activating Lived Experience Leadership (ALEL) Project

in partnership with UniSA’s Mental Health and Suicide Prevention Research Group 

The Activating Lived Experience Leadership (ALEL) Project [2019-2021]:

[In Partnership with UniSA, funded by the Fay Fuller Foundation and supported by the South Australian Mental Health Commission] 

 

The broad purpose of the ALEL Project is to examine and describe how lived experience advocacy and leadership embedded within the mental health ecosystem can be defined, recognised and utilised in SA. Our aim is to influence and effect ongoing system change through action and research.

The questions that underpin the project challenge the status quo in SA, and around Australia more broadly. Change is urgently needed to enable consumers and carers to participate in a leadership future developed by, for and with the peer community. The crucial need to develop effective strategies and pathways for lived experience leadership in SA is essential for people experiencing distress and mental health issues being valued differently. 

The ALEL Project is the most significant investment to date in this area of inquiry and action in South Australia (SA). 

 

If you have questions about this work please contact: Ellie Hodges, Executive Director of LELAN via ehodges@lelan.org.au or Mark Loughhead, Senior Research Fellow at UniSA via mark.loughhead@unisa.edu.au .

 

Key Project Activities & Outputs:

Coming in August 2021

Core documents from the ALEL Project will be released in early August. They represent evidence-based lived experience-led research and activation of the lived experience community in SA and are a clear call to action for leveraging lived experience leadership for systems change.

The documents being released will be:

1. Roadmap for Lived Experience Leadership & Systems Change

2. A Consensus Statement for Leveraging Lived Experience Leadership

3. Model of Lived Experience Leadership

Lived Experience Leadership National Survey | Nov 2020

The national survey is seeking to understand more about how to define lived experience leadership, the different roles that leaders take on, the conditions and supports that help with influence and change and the learning resources that help leaders.

The survey can be accessed here.

Interviews with System & Sector Leaders| Mid-2020

Individual interviews with fourteen system and sector leaders were held via Zoom. The main areas of inquiry related to: what lived experience leadership is; the values, qualities and skills of lived experience leaders; systemic challenges and barriers for lived experience; places for lived experience leadership to occur; and what lived experience needs to thrive and have impact.

Early Research Findings can be accessed here.

Interviews with System & Sector Leaders| Mid-2020

Individual interviews with fourteen system and sector leaders were held via Zoom. The main areas of inquiry related to: what lived experience leadership is; the values, qualities and skills of lived experience leaders; systemic challenges and barriers for lived experience; places for lived experience leadership to occur; and what lived experience needs to thrive and have impact.

Early Research Findings can be accessed here.

Lived Experience & Systems Change Workshop | April 2020

The Systems Change: Lived Experience Considerations and Opportunities workshop created a lot of interest with registrations being closed early with forty-eight people on the list. The session provided a platform to explore the necessity for and role of lived experience in systems change. It was based on the premise that a collaborative, cross-sector and multi-level approach is the best way to tackle these challenges and our commitment to increasing knowledge, skill and action in this space.

System & Sector Leader Summit #1 | Oct 2019

Summit participants used the Six Conditions of Systems Change model to unpack the key factors that reinforce current conditions and hinder progress for lived experience. A Summary Report articulates these themes and the Summit’s three key recommendations: the need to better articulate the value and evidence base surrounding lived experience; the creation of a Community of Practice for Lived Experience Leadership & Change; and the need for a Lived Experience Strategic Framework in SA.

A Summary Report for the Summit can be accessed here.

Welcoming the Project Advisory Group | Sept 2019

The Project Advisory group (PAG) guides the design of the research project, analysis of themes and findings and advises on the community development components of the project focused on activating lived experience networks and engaging service leaders in conversations about lived experience advocacy and systems change in SA. The PAG has seven lived experience members and five service members, including a Peer Worker.

early-August 2021 | Launch Event

A launch event is being held in early-August to release core project documents and findings into the world. It will also an opportunity to celebrate the work with our community.

This event will provide a clear message to the sector that lived experience leadership is a key driver for systems change that we all have a responsibility to take action on, together. The papers being released are the guide for how to do it with success.

Feb 2021 | System and Sector Leader Summit #2

Summit#2 provided the opportunity to share research findings with participants to collectively determine opportunities for change and what action we can take together. Eight key areas for action were identified and have been drafted into a Consensus Statement that will be finalised and released in early August.

A Summary Report from the Summit can be accessed here.

Sept 2020 | Scoping Literature Review

This literature review is about the concept and achievement of lived experience leadership, and the roles that leaders undertake in seeking change, sharing a vision of recovery and enhanced citizenship. It is also about the organisational and system conditions that support leaders across different settings of activity, including traditional mental health services, academia and consumer run organisations (CRO), and the informal places where leaders seek and organise for change.

The Review can be accessed here. 

Mid-2020 | Focus Groups with Lived Experience Leaders

Two rounds of focus groups with thirty-one self-identified lived experience leaders were held via Zoom and an online forum platform between sessions. The main areas of inquiry related to: what lived experience leadership is; the values, qualities and skills of lived experience leaders; challenges and barriers for lived experience leaders; the impacts of lived experience leadership for recovery; creating learning and networking pathways for strengthening lived experience leadership; and what lived experience needs to thrive and have impact.

Early Research Findings can be accessed here.

Feb 2020 | Community of Practice

The Community of Practice offers a ‘safe space’ that encourages discussion, information exchange and capacity building related to lived experience leadership, advocacy and change in mental health and related sectors. It meets every six weeks on Zoom. 

Email info@lelan.org.au to register interest and join the CoP.

Oct 2019 | Lived Experience & Research Workshop

This workshop focused on identifying the skills involved in searching for information and research that can be used in advocacy or learning about a particular topic, practice or issue. Seventeen people with lived experience attended. 

July 2019 | Meet the Team

LELAN & Project Lead: Ellie Hodges | ehodges@lelan.org.au 

Senior Research Fellow: Mark Loughhead | mark.loughhead@unisa.edu.au 

Research Assistant: Heather McIntyre | heather.mcintyre@unisa.edu.au 

UniSA Lead: Professor Nicholas Procter