Community Collaboration Program

The ANZCHOG Community Collaboration Program provides a meaningful and impactful connection between the scientific community and the lived experiences of patients, carers, and families affected by paediatric oncology and haematology.

At ANZCHOG, our core values are excellence, compassion, collaboration and integrity. We value input from all those with lived experience and strive for a diverse range of input from a range of disease types, geographic locations and cultural backgrounds. We acknowledge that in a paediatric setting, consumer representatives are often parents and carers, however we also welcome and encourage the perspectives of patients (aged 18 and above) who have been treated for cancer as a child or young adult (minimum two-years post-treatment).

Within the Community Collaboration Program, there are two tiers of involvement; the Community Collaboration Group (CCG) and Community Collaboration Program Registry. Participation in both of these areas is voluntary.

Community Collaboration Program Registry

Members of the Community Collaboration Program Registry provide input for ANZCHOG’s clinical trials and peak professional body activities, in the format of online surveys and an annual consumer session. There is no minimum time commitment to participate in the registry.

Community Collaboration Group (CCG)

The Community Collaboration Group (CCG) provides input into ANZCHOG’s two operational areas; clinical trials and peak professional body activities. This group has three core interest areas in which participants are able to register for; Research, Advocacy and Education. Members of the CCG are expected to undergo a formal application process, complete relevant training provided by ANZCHOG, abide by the group Terms of Reference and meet minimum time requirements. The CCG has a set number of members and therefore, not all applications will be successful. Unsuccessful applicants to the CCG will be invited to provide input via the Community Collaboration Program Registry.

Frequently Asked Questions (FAQs)

What is a consumer? Is there a difference between a consumer and someone with lived experience?

The Australian Commission on Safety and Quality in Health defines a consumer as a person who uses (or has used use) a health service, or someone who provides support for a person using a health service. Consumers can be patients, carers, family members or other support people.

The term ‘consumer’ is often used interchangeably with friendlier terms such as ‘people with lived experience’, ‘patients’, ‘carers’ and ‘community members’.

Do I (as a patient) or my child need to have participated in a clinical trial to be a part of the ANZCHOG Community Collaboration Program?

No, we encourage anyone with lived experience of paediatric oncology to join the Community Collaboration Program.

Can I join the ANZCHOG Community Collaboration Program if my child is still in treatment?

You are more than welcome to join the Community Collaboration Program Registry while your child is undergoing treatment, which will allow you to stay updated on ANZCHOG’s trials and activities and participate in online surveys. However, we encourage those applying for a role in the Community Collaboration Group (CCG) to be around two years post-active treatment which will allow you to fully participate and meet the time requirements.

Can I join the ANZCHOG Community Collaboration Program if my child has passed away?

You are welcome to join the Community Collaboration Program Registry or submit an expression of interest for the Community Collaboration Group (CCG) if your child has passed away. Previous bereaved parents and guardians have recommended three to five years after your child has passed away before joining, however there is no set time-frame and you will know best at which point it is suitable for you to join.

To join the Community Collaboration Program Registry, or to express your interest in the Community Collaboration Group (CCG), please click ‘Register Now’ below.

If you have any questions, or would like to know more about the ANZCHOG Community Collaboration Program, please contact our Communications and Marketing Coordinator, Jess Bucci – jessica.bucci@hudson.org.au