Researchers want to know what Australians diagnosed with cancer think about sharing human research data

Have you previously been diagnosed with cancer? Are you interested in how scientists share their research findings? If so, researchers at the University of Melbourne would like to hear from you!

Cancer scientists do research for many reasons. They might want to test how well a new treatment works, improve ways of finding cancers earlier, or better understand how cancers grow.

When cancer scientists carry out research, they will record information about the methods they use, the participants of the research (eg people, tissues, cells) and the outcomes of each test or observation. This raw information is normally referred to as ‘research data’.

Hands typing on a laptop computer; in front of the computer sits a stethoscope
Photo by National Cancer Institute on Unsplash

When investigations are completed, scientists will always publicly share a summary of their research data. However, it is not yet standard practice to share the actual research data publicly as well.

Researchers from the University of Melbourne’s Faculty of Science are running a research project to understand what Australians previously diagnosed with cancer think about the ways they collect, store and share data from their research called the ‘Your Data, Your Say’ survey.

If you have ever been diagnosed with a cancer of any kind, and you have time to take a 15-minute survey, please help us to give people a voice on this topic.

Take the survey now

If you have any further questions about the research, please contact the research team via email at yourdata-yoursay@unimelb.edu.au.

This study is being conducted as part of a PhD thesis and has not received any funding. This project has been approved by the University of Melbourne’s STEMM 2 Human Research Ethics Committee (Ref. No.: 2022-22111-29284-4).

If reading this article has brought up difficult emotions for you, please reach out to your general practitioner, community nurse or call the Cancer Council Helpline on 13 11 20 for information, resources and connection to support programs and advocacy services for those affected by cancer. If you are in immediate danger, please call 000.