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We promote the community ‘voice’ in health research.

Cancer Centre Community Reference Group

Do you have personal experience of childhood cancer? If so, you could help advise cancer researchers at the Telethon Kids Institute, who are looking for 2 parents, carers or adults to join their Community Reference Group.

child laying in a bed with hands on chest and drip in left hand

About the project/vacancy

Despite remarkable medical advances over the past three decades, cancer is still the leading cause of death by disease of young people between the ages of 1 and 14 years.

Cancer also takes a toll on those who are cured. Cancer and cancer treatment during the early years of life can be long-lasting. Survivors and their families face a large range of physical and psychological challenges resulting from the disease, and some will suffer challenging long-term effects for the rest of their lives.

The Cancer Centre at Telethon Kids Institute is the sole Centre in Western Australia dedicated to finding effective treatments and cures for childhood cancers. We strive for a future where no child will die from cancer and where survivors can live life to the full.

In close partnership with Perth Children’s Hospital, we are working to develop specific cancer therapies to cure children with cancer. These therapies include chemotherapy (through drug discovery and repurposing), radiotherapy, surgery and immunotherapy.

Find out more about the Cancer Centre. The Centre’s Community Reference Group was established in late 2016.

About the position

The Telethon Kids Institute Cancer Centre is looking for 2 carers or community members to join the Community Reference Group. A personal connection to childhood cancer, either as a parent, guardian, carer, or through lived experience, is important for this position.

What am I expected to do?

Community Reference Group members:

  • Have input into the overall goals, activities, vision and strategic direction of the Telethon Kids Cancer Centre
  • Provide feedback on the relevance, understanding and value of the research
  • Ensure the community is informed in plain language about the progress of the research projects
  • Discuss strategies for advising the community about the results of the research

Members of the group will also be invited to act as a research buddy for a specific program of research within the Cancer Centre. In this role you will help develop strong links between consumers, community organisations and researchers.

What skills or experience do I need?

You need to be a parent or carer of a child who has experienced childhood cancer, or an adult who experienced cancer as a child.

How long am I expected to be involved?

The Community Reference Group meets three times per year, usually on Monday evenings. Each meeting is no longer than two hours. A minimum two-year commitment to the Reference Group is preferred.

Reference group members can choose if they would also like to be involved as a research buddy for a specific program of research. In this role, group members will be invited to attend project meetings or to review research documents outside of meetings. Time spent on these additional activities will be mutually arranged with the research team.

Where will meetings be held?

Telethon Kids Institute, Northern entrance, Perth Children’s Hospital, 15 Hospital Ave, Nedlands

What support is offered?

$30 honorarium per hour for meetings attended and any out-of-session activities, including research buddy activities. Where required, a parking voucher will be provided for attendance at Reference Group meetings. Free training and support is offered by the Consumer and Community Health Research Network.

Applications close: 05 April 2019

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