Use your cancer experience to help others

Thursday 31 October, 2019


Pam's cancer experience is helping researchers Professor John Silke (centre) and Dr Najoua Lalaoui (right).

Meaningful consumer engagement in cancer research can improve outcomes and experiences for people affected by cancer.

WEHI, PeterMacCallum and Monash University are looking for patients and carers to support cancer research including those that have experienced Cancer of the Unknown Primary and upper gastrointestinal cancer. Please find out how you can get involved.

Engage with WEHI’s medical researchers

If you’ve been diagnosed with cancer or been a carer, you can share your experiences and knowledge with scientists to enhance medical research through the Walter and Eliza Hall Institute’s Consumer Buddy Program.

Ms Katya Gray, Institute Consumer Coordinator said consumers have valuable knowledge of the practical, social, physical and emotional effects of the medical condition on themselves, their families and friends and/or on the broader community.

“Consumers involved in the program provide a link between the researcher and the community as well as providing insight into that disease type,” Ms Gray said. “They are partnered with a researcher in the area of their interest, or a project relating to their own medical condition.

“Involvement of consumers can influence and enhance research at The Institute and provide a powerful voice for the communication of scientific and research issues to the community.”

You don’t need a science background, the time commitment is flexible, and The Institute provides all training.

To learn more about joining WEHI’s Consumer Buddy Program, contact Katya Gray, Institute Consumer Coordinator: 03 9345 2981 or 0408 525 122 email: or visit WEHI’s website

Peter Mac

Peter MacCallum Cancer Centre SUPER group

Peter MacCallum Cancer Centre is looking for volunteers with a personal experience of Cancer of Unknown Primary to join its 'SUPER' group.

Researchers are interested in hearing from you about your lived experiences as they recognise that due to the uncertain nature of the disease more research into this area is required.

Therefore, this program aims to change this situation by securing grant funding. To do this, it’s seeking patients and care givers to join this group.

The group will meet to identify the unmet needs of patients and carers and provide guidance on proposed research grants. Meetings would occur during regular office hours, at most once a month and can be attended either in person or through dial-in facilities.

If you are interested or would like to learn more, please contact Colin Wood, SUPER Project Manager, 03 855 96466 or

Helping patients with upper gastrointestinal cancers

Monash University researchers are inviting patients with upper gastrointestinal cancers and their carers to take part in a research project to help develop a questionnaire to improve cancer outcomes for others.

People with pancreatic, oesophageal and stomach cancer may have a range of symptoms that impact their quality of life. Researchers need help in understanding the best way to communicate these symptoms with your health care professionals.

The outcome will be an electronic questionnaire for people affected with pancreatic and oesophagogastric cancers.

Your support involves a focus group and interviews at Monash University, 553 St Kilda Road, Melbourne. For regional participants, video conferencing will be available.

For more information or to register your interest, please contact Dr Liane Ioannou at or call 03 9903 0046.

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