Lived Experience Network (LEN) Establishment Committee

1) What is AEPCC?

AEPCC is the Australian Early Psychosis Collaborative Consortium – we pronounce it ‘APEX’. It’s a new project led by Orygen which is all about improving the lives of young people with living and lived experience of early psychosis.

Up until now, AEPCC has been establishing two key programs:

Clinical Trials and Translation Network (CTTN)

The aim of AEPCC’s CTTN is to facilitate high-quality research, identify important research questions and help put the findings of research into clinical practice.

Clinical Quality Registry (CQR)

AEPCC’s CQR will collect health-related data from young people accessing early psychosis services, providing insight into treatment, care and symptoms, which can be used to improve outcomes for young people with early psychosis.

Both of these programs primarily involve researchers and clinicians, and both have big implications for the early psychosis lived experience community. For this reason, we’re also establishing another program – the AEPCC Lived Experience Network (LEN).

The LEN is an opportunity for the early psychosis lived experience community to have a say, and have a seat at the table alongside researchers and clinicians.

Exactly how the LEN will function remains undecided, which is why we want to speak to you.

2) What is the opportunity?

We’re starting a national Establishment Committee to drive the design of the LEN.

This decision-making body will be made up of representatives from across Australia, who will come together to share their experiences and advocate for the needs of the early psychosis community.

The LEN Establishment Committee will have 10-15 members, the majority young people (aged 16-30) with a lived experience of early psychosis.

We’re also inviting carers, family members, friends, allies, and community advocates to offer their expertise as part of the committee.

While much of this is subject to change, the Establishment Committee is being set up with several key goals in mind:

To identify the needs of the early psychosis community.

The LEN Establishment Committee will work to not only identify these needs, but to prioritise them and advocate for them across AEPCC’s work.

To co-design the LEN.

With the needs and experiences of the lived experience community as a foundation, we’ll co-design a vision for the LEN. This will be an iterative process, informed through consultation by co-design experts and the other AEPCC programs (CTTN and CQR).

To explore ways of embedding lived experience voices across AEPCC.

The LEN Establishment Committee will develop a plan to integrate lived experience voices across the whole of AEPCC, and explore ways of ensuring that they’re not only present, but also heard.

To explore ways of meaningfully engaging with marginalised and at-risk communities.

We know that some groups of young Australians are more vulnerable to mental illness and to psychosis than others. Likewise, we know that some groups have been historically shut out from conversations around their own care. For this reason, we strongly encourage applications from diverse and marginalised communities. The LEN Establishment Committee will work to partner with these communities broadly, in a way that’s mutual, constructive and avoids tokenism.

To receive and develop training for the research and lived experience community.

In order for all members to participate in the LEN Establishment Committee as equals, we’ll be offering training and resources around research, clinical practice and advocacy. The Establishment Committee will develop guidelines around best practice for lived experience participation in the early psychosis space, and explore ways of building the lived experience community’s capacity to participate in research and clinical care.

To deliver two public engagement projects

By the end of 2023, we’ll deliver two public engagement projects with the joint aims of combatting stigma and raising awareness around psychosis. These public engagement projects will be directed and organised by LEN Establishment Committee members.

3) How can I get involved?

Applications for the inaugural AEPCC LEN Establishment Committee have now closed. There will be more information about how you can find out the AEPCC LEN on our website as things develop…make sure you sign up for our newsletter to stay up to date.