Youth Cancer Action Network - Peter MacCallum Cancer Centre

The Youth Cancer Action Network is made up of young people who are empowered and supported to take on formal and informal roles as youth representatives to provide advice and guidance to the Victorian AYA Cancer Service, the Victorian Department of Health and the broader health and community sectors on youth-related cancer programs and initiatives. The Network also supports the ongoing implementation and monitoring of the Victorian AYA Cancer Service’s Youth Participation Strategy. It currently comprises the Youth Cancer Action Board (YCAB) and the Youth Cancer Action Advocates (YCAA).

Victorian and Tasmanian Youth Cancer Action Board (YCAB)

Youth Cancer Action Network

YCAB comprises a diverse group of 12 young people diagnosed with cancer between the ages of 15 and 25 years. Together they are the collective voice responsible for providing advice and guidance to government and the broader health and community sectors on cancer policy, priorities and services affecting Victorian and Tasmanian youth.

Established in 2010, YCAB is governed by Peter Mac and closely supported by the Victorian Adolescent & Young Adult Cancer Service, reporting through to the Victorian Department of Health. Some of their advocacy work and achievements to date include:

Developing position statements to influence policy and service provision in youth-determined areas of need/importance

Affordable fertility preservation for young people (Sept 2012) – supported a national advocacy program that successfully lobbied for additional Medicare items for fertility procedures
Access to clinical trials for AYA with cancer (Aug 2017) – used in a national advocacy campaign that resulted in funding for the Commonwealth Government’s Australian Young Cancer Patient Clinical Trials Program.
Delivering appropriate care to young LGBTIQ+ people affected by cancer (May 2018) – influenced significant changes to delivery of care at Peter Mac for young people who identify as LGBTIQ+
The mental health of young people with cancer (Aug 2020) – used in promoting the importance of considering mental health alongside physical health and advocating for improved access to mental health support for young people experiencing cancer.

Shaping the development of youth-friendly hospital environments and services

Co-design of the Youth Cancer Centre and two AYA rooms in the Palliative Care Unit (Peter MacCallum Cancer Centre)
Co-design of an AYA room (Royal Hobart Hospital)
Advocating for the appointment of an Education and Vocation Advisor (Victorian AYA Cancer Service)
Consulting on a range of projects focussed on improving diagnosis and treatment in paediatric and AYA oncofertility (Victorian Fertility Preservation Program, Royal Children’s Hospital Melbourne & The Royal Women’s Hospital).

Contributing to the development of practice frameworks and models of care

Informing priorities and co-designing age-appropriate resources for young people diagnosed with cancer

Thinking ahead: a guide to school, study and work for young people who have had cancer – guidance on education and vocation pathways and strategies for support across health, education, and community sectors
Getting to grips with general practice – information about the importance of primary care and guidance on how best to engage with GPs (General Practitioners) to maximise health and wellbeing
Being ok…being you – information to support young people with cancer who identify as LGBTIQ+
ReGenerate – an app to support young people’s post-treatment health and wellbeing featuring information, videos, and youth-hosted podcasts

Contributing to and advising on the design, development and content of health professional education and training programs

YCAB is regularly invited to present their work at national and international conferences. They meet formally six times per year, both remotely and in person in the Youth Cancer Centre at Peter Mac. Board members are broadly representative of the diversity of young people and treatment experiences across a range of settings (paediatric/adult, metro/regional, public/private), and are appointed for a three-year term via a formal application and interview process.

Youth Cancer Action Advocates (YCAA)

YCAA logo

Established in 2021 with support from the Victorian Department of Health, the YCAA is a broader network of young people with a cancer experience whose members (aged 15-30 years) can be engaged for a range of initiatives and activities, such as:

Reviewing or advising on youth cancer-related policies, plans, programs, or environments
Consulting on education and training and other initiatives to support clinicians in addressing the needs of AYA
Informing collaborative research priorities
Participating in research or other opportunities for sharing opinions, views, and experiences

YCAA members may serve on committees, boards, working groups or panels; as liaisons, advisors, or team members on specific projects; or in other roles involving active dialogue with health professionals and decision-makers. Opportunities are allocated based on young peoples’ area(s) of interest and availability.

Interested in engaging the Youth Cancer Action Network in your work or project?

Complete the Youth Participation Request Form

All requests are triaged to either YCAB or YCAA by the Victorian AYA Cancer Service’s Youth Participation Coordinator.

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