Award-winning interactive tool helps patients better understand inherited cancer risk 

Swinburne University of Technology, in partnership with the Peter MacCallum Cancer Centre and the University of Melbourne have developed the award-winning Cancer Risk Thermometer – an interactive decision support tool – to help people better understand their inherited cancer risk. 

The team, which includes Swinburne’s Dr Shivani Tyagi, Professor Prem Prakash Jayaraman, Dr Abdur Forkan and Mr Liam Bradley, led the information design, interaction design, and digital development of the Cancer Risk Thermometer, as part of Peter Mac’s ActionPlan platform. 

The ActionPlan is a digital platform developed for people with genetic variants linked to significantly increased risks of breast and ovarian cancer. 

However, a key challenge lay in presenting complex risk information, including lifetime probabilities and the impact of preventative surgery, in a way that was meaningful for patients. 

“Our aim was to translate complex genetic risk information into something patients can genuinely understand and use when making decisions about their health,” says Dr Tyagi, who led the digital design of the tool. 

The Cancer Risk Thermometer was recently recognised with a prestigious International Institute for Information Design award, in the Healthcare category celebrating the innovative collaboration between clinical experts, designers, technologists and consumer advocates, and its potential to support people with hereditary cancer risk in managing their health. 

Helping patients understand and act on their cancer risk

“Patients are often given a large amount of information in a single appointment and then asked to make decisions that may affect the rest of their lives,” says Associate Professor Alison Trainer, clinical geneticist at the Peter MacCallum Cancer Centre and lead researcher on the project. 

The Cancer Risk Thermometer addresses this challenge by allowing users to see how their cancer risk changes over time, compare their personal risk to population averages and explore how preventative surgery may reduce future risk.

“To our knowledge, this is the first evidence-based, interactive decision tool to integrate breast and ovarian cancer risk in a single, coherent and interactive interface,” says Dr Tyagi. 

The Cancer Risk Thermometer includes several features that sets it apart, namely:

• a two-stage interaction interface that makes long-term risk accumulation tangible 

• a side-by-side comparison of personalised risk, population risk and post-surgery risk within a single interface

• explicit differentiation between lived risk and remaining risk over time 

• interactive exploration of timing effects for preventative surgery

• plain language explanations, tool tips and accessibility features  

Designing technology that supports real-world care

Through a human-centred design approach, the multi-disciplinary Swinburne team, which included expertise in information design, digital interaction, machine learning and software engineering worked closely with patients, clinicians and consumer advocates to co-design and refine the tool through ongoing feedback and testing.

The Cancer Risk thermometer is transforming the way complex clinical risk models are interpreted and applied, improving patient’s decision-making abilities.

“Clinician feedback tells us that the tool helps patients more easily understand decades-long risk accumulation and how the timing of interventions can meaningfully alter outcomes,” Dr Tyagi says. 

“By making abstract probabilities more concrete and explorable, the Cancer Risk thermometer supports more focused, informed conversations between patients and clinicians about whether and when to act.”

Supporting the future of personalised cancer care

The ActionPlan platform is now being evaluated through the national EMPOWER ActionPlan clinical trial supported by the Peter MacCallum Cancer Centre and funded by the National Breast Cancer Foundation.

Researchers are assessing whether access to the platform improves patient empowerment and decision-making when used alongside standard genetic counselling. 

“The Cancer Risk Thermometer is designed to be scalable. While the current tool focuses on breast and ovarian cancer risk, the same design pattern could be applied to other hereditary conditions,” says Dr Tyagi.