RARE CANCERS AUSTRALIA (APR – 2910)

Barriers and Opportunities for Earlier Diagnosis of Rare and Less Common Cancers: Insights from a National Cancer Lived Experience Survey

Medical, Biological and other Sciences

ABOUT THE INDUSTRY PARTNER

Rare Cancers Australia (RCA) supports and advocates for people living with rare cancers in Australia, doing whatever it takes to change the story of a rare cancer diagnosis and ensure people are supported from every angle, from the beginning. People with rare cancers face poor survival, high uncertainty, high financial impact and limited treatments, information and support. RCA’s advocacy highlights these inequities and drives solutions for a fairer system and better outcomes for people with rare and less common cancers and their families.

WHAT’S IN IT FOR YOU?

• Gain hands-on experience analysing a large, nationally significant lived-experience dataset.
• Apply practical skills in mixed-methods research, health systems research, and real-world data interpretation.
• Produce findings and publishable outputs that directly inform national health promotion activities, early-diagnosis initiatives and policy.
• Work closely with senior leaders and a strong patient community in a respected and impactful national not-for-profit organisation.

RESEARCH TO BE CONDUCTED

This project will investigate the factors that contribute to delayed diagnosis in rare and less common cancers, using insights from a Cancer Lived Experience Survey (LES), one of Australia’s largest datasets capturing the real-world experiences of nearly 2,500 people with cancer and their carers. The research will examine patient- and system-level barriers such as symptom recognition, health-seeking behaviour, health professional interactions, referral pathways, and access to diagnostic testing. It will include analysis of both quantitative patterns and qualitative narratives to understand the diagnostic pathway and what enables a timely diagnosis. It will also look at differences between the experience of people with common cancers and those with rare and less common cancers.

The project will also include an assessment of current cancer early detection policy and practice in Australia and a scan of international approaches to early diagnosis, comparing Australia’s lived-experience findings with strategies implemented in other jurisdictions. Bringing these insights together, the intern will develop practical, evidence-based recommendations to guide future activities aimed at improving early diagnosis and awareness of rare and less common cancers.

The outputs of this research will contribute directly to national advocacy, policy development, and public-facing health promotion strategies designed to streamline the diagnostic journey for Australians affected by rare and less common cancers. They will include at least one article for publication, working with co-authors from RCA and other institutions.

SKILLS WISH LIST

If you’re a postgraduate research student and meet some or all the below we want to hear from you. We strongly encourage women, indigenous and disadvantaged candidates to apply:

• Data analysis, social research, clear writing and communications skills.
• Understanding of health systems and/or public health.
• Interest in or some experience of health services and supportive care and working with patient communities (but no direct patient contact would be required).
• Ability to work independently, manage own research and collaborate with others for best outcomes.

RESEARCH OUTCOMES

• An analysis of diagnostic pathways for people with rare and less common cancers, identifying the key patient-, clinician-, and system-level factors linked to delayed or timely diagnosis.
• Evidence-based insights into barriers and enablers, drawn from both quantitative patterns and qualitative lived-experience narratives within the survey dataset.
• A comparative assessment of international early-diagnosis initiatives, highlighting approaches used in other jurisdictions that could be adapted for the Australian context.
• Practical, actionable recommendations to inform future activities aimed at improving symptom awareness, and access to timely diagnostic assessment.
• A published journal article that strengthens the national evidence base on early diagnosis in rare cancers and supports policy and advocacy efforts.

ADDITIONAL DETAILS

The intern will receive $3,300 per month of the internship, usually in the form of scholarship payments.

It is expected that the intern will primarily undertake this research project during regular business hours and maintain contact with their academic mentor throughout the internship either through face-to-face or phone meetings as appropriate.

The intern and their academic mentor will have the opportunity to negotiate the project’s scope, milestones and timeline during the project planning stage.

Please note, applications are reviewed regularly and this internship may be filled prior to the advertised closing date if a suitable applicant is identified. Early submissions are encouraged.

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