There are more than one million Australians living with a cancer diagnosis and associated effects on quality of life, ranging from physical symptoms and side effects of treatment to uncertainty about the future and other negative impacts on psychological and social functioning. 

We know these problems exist but there is a lack of population-based research in Australia to inform health professionals about their prevalence, how they change over time, who is most at risk, and what factors might support recovery.  

To help address this gap, Dr Imogen Ramsey from Flinders University’s Caring Futures Institute has received a prestigious Beat Cancer Fellowship with Cancer Council SA. 

Her three-year project – “Surveillance of patient-reported outcomes in cancer survivorship: a patient-centred approach to understanding the impacts of cancer on population health” – will explore barriers and solutions to the routine collection of self-reported data that examines the symptoms, functioning and health-related quality of life of cancer survivors after treatment. 

Dr Ramsey believes a national approach to monitoring the health and wellbeing of cancer survivors could provide valuable data to inform clinical practice, health service design, and policy. She spent six months of her PhD working with the PROFILES registry in the Netherlands, which routinely collects this type of data from cancer survivors to capture the true burden of cancer on population health.  

“Population-based patient-reported outcome data have been used in other countries to support clinical decision-making, disease burden prediction, the identification of public health issues, the design of appropriate health interventions and services, and the allocation of health resources to areas of highest priority,” says Dr Ramsey. 

This Australian-first research has three objectives: to co-design a registry for post-treatment, population-based surveillance of cancer survivorship; to identify system improvements that will influence the efficient implementation of the registry; and to evaluate its implementation. Engagement with cancer survivors and other key stakeholders is central to the research design. 

In time, Dr Ramsey hopes that this information will be routinely collected and used by health professionals, researchers, and policy makers to improve care and design support services that meet the needs of South Australians affected by cancer.  

If you are a cancer survivor and would like more information or to be involved in this research in the future, please contact Dr Imogen Ramsey.