Led by Professor Penelope Schofield, the personalised health care program works in close collaboration with the Peter MacCallum Cancer Centre to identify and solve health challenges faced by people with cancer. Our program aims to improve their health literacy and behaviours through personalised approaches, community engagement and supportive interventions. 

Our research focuses on:

  • Understanding and addressing the behavioural needs of people with cancer to maximise self-care, survivorship and quality of life while minimising unnecessary healthcare expenditure.

  • Assisting patients to make informed decisions within a shared patient-healthcare professional partnership environment.

  • Exploiting technological advancements that enable all patients, including those in regional and remote locations, to access healthcare behaviour change interventions.

Our projects

This project is a partnership with the Peter MacCallum Cancer CentreQueen’s University BelfastDeakin UniversityCancer Council Victoria/Australia and the production company I’m Content. Funded through Cancer Australia, the aim is to adapt and refine a British online resource for carers called ‘Cancer Caring Coping’ (CCC) so that it meets the needs of Australian cancer carers, particularly those living in rural and regional area. This new online resource is pre-emptively named ‘Australian Carers Talk’ and will be co-designed with informal cancer carers from metropolitan and rural areas to ensure the content is relevant and useful. 

In Australia, approximately one-third of informal carers are estimated to spend up to 40 hours or more per week in their caregiving role, accounting for an estimated 1.9 billion hours of unpaid care. Providing this informal care can have a negative impact on the carer’s quality of life and their physical and mental health. 

Rural populations in particular are more likely to experience socioeconomic disadvantage, which is reflected in cancer outcomes that are worse among these populations in comparison to urban populations. Australian carers living remotely face additional challenges getting support locally and confronting not only physical but also sociocultural distance when accessing cancer services in major cities. 

For urban carers, programs and supports are often not readily available due to limited health resources or easily accessible because of time constraints experienced by carers. With our project, we’re hoping to provide useful and helpful content to provide these carers with some support and guidance.

In partnership with the Peter MacCallum Cancer Centre and with funding through the Digital Health Cooperative Research Centre (DHCRC), we’re aiming to develop and validate a 4-model decision support tool that can drive appropriate evidence-based, real-time decision-making for surgical and interventional procedures, to optimise patient outcomes and prevent avoidable complications. 

Prevention of thromboembolism (TE) has been a high-priority safety initiative for over a decade, yet systematic real-time approaches to TE prevention, particularly post-surgery, remain suboptimal. Appropriate management has the capacity to mitigate adverse outcomes that carry substantial clinical and economic implications. However, current published guidelines are complex and lack personalised applicability, which renders them impractical for real-time decision-making and implementation across institutions, and clinical practice remains highly variable. Clinicians (and patients) need timely access to appropriate decision-making tools that are relevant to real-world personalised practice. 

Our project CLOTS (Consultation on haematoLogical Optimisation and Thrombosis in Surgery) incorporates risk-predictive tools and decision-making algorithms in key health priority areas. This technical solution can assist healthcare providers in making evidence-based, point-of-care decisions for periprocedural optimisation. CLOTS can be used real-time by any clinician, in any clinical forum, for all patients where these management decisions occur. This solution will help standardise clinical care delivery as it is scalable to any health delivery service in Australia and internationally. It will build capability and capacity, deliver value to health systems through personalised optimisation of patient care, mitigate adverse outcomes and enhance patient recovery.

In partnership with the Peter MacCallum Cancer Centre and with funding through the Digital Health Cooperative Research Centre (DHCRC), this project aims to improve survivorship and quality of life in those living with chronic illnesses, while reducing unnecessary healthcare expenditure from medication errors and non-adherence. 

The combination of an ageing population, longer life expectancy and the rapid rise of chronic conditions is placing pressure on healthcare expenditure. One key area of expenditure is medication, with medication errors and non-adherence placing a tremendous drain on tight budgets, which can in turn negatively impact patient outcomes and tie up human/clinical resources that are limited and needed elsewhere. 

SAMSON is a platform solution designed to assist with medication management, offering a digital health solution that is integrated with direct clinical care and can help substantially reduce the direct and indirect costs of medication errors and non-adherence. SAMSON targets the cognitive, behavioural and affective aspects of medication adherence to form good medication adherence behaviours and provides ongoing daily adherence support for long-term maintenance of established behaviours. This system (and earlier versions of it) have been successfully tested in a convenience community and a haematological sample. 

We’re in the process of re-building SAMSON to accommodate a wide range of chronic illnesses. This rebuild will also incorporate a ‘companion’ online nurse training platform to facilitate online or phone support to enhance medication adherence in low adherers. We’ll then conduct a clinical trial to demonstrate feasibility, acceptability and efficacy of the platform. 

Overseen by the Peter MacCallum Cancer Centre and with funding from a National Health and Medical Research Council (NHMRC) grant, our involvement in this project involves creating an online treatment decision aid for men diagnosed with low-risk prostate cancer and their partners.

Prostate cancer is the most common non-skin cancer affecting Australian men, with one in seven expected to receive a diagnosis by the age of 75. The side effects for men being actively treated for prostate cancer (through surgery, radiotherapy, brachytherapy or chemotherapy) can be ongoing and distressing. They can include urinary and bowel incontinence, and erectile and sexual dysfunction.

An alternative management strategy for low-risk prostate cancer is active surveillance (monitoring the tumour’s progress regularly) and the survival outcomes are equivalent to patients receiving the more invasive treatment options. However, it can be challenging for men to consider surveillance versus active treatment when confronted with a diagnosis of cancer.

We’ve developed a website that presents evidence-based, unbiased lifestyle and wellness information alongside curative treatment options, including active surveillance. Participants and their partners can access an online exercise to clarify and integrate their values into their treatment decision-making. As a control, randomly selected participants will use the Prostate Cancer Foundation of Australia website for care decisions while the remainder use the Navigate website.

Participants fill out a self-reporting questionnaire at the beginning of the project and again at one, three and six months. This assesses outcomes in the areas of: 

  • decisional conflict

  • knowledge

  • distress

  • satisfaction

  • patient—partner communication

  • decisional regret

  • health care costs.

The Navigate project aims to help men understand the risks and benefits of each treatment option and their side effects, as well as reduce confusion, distress and decisional regret.

The House of Wellness
The House of Wellness

Professor Schofield’s television guest appearance on Channel 7’s House of Wellness to promote Navigate, coinciding with Father’s Day and Prostate Cancer Awareness Month.

You can read more articles, watch videos and listen to interviews regarding the project via the Navigate website.

Funded by Cancer Australia and the Victorian Cancer Agency, this project is a prospective cohort study to create a national information resource that can improve the understanding of the molecular biology, clinical, quality of life and psychosocial characteristics of patients with Cancer of Unknown Primary (CUP). The SUPER study is active in 11 metropolitan and regional sites across Australia and aims to recruit a minimum of 350 participants. 

CUP is a metastatic cancer where a primary tissue of origin (ToO) evades detection despite extensive clinical investigation. CUP is typically treated with empiric chemotherapy, which provides limited survival benefit for most patients. To resolve the likely ToO and to enable site specific therapy, we’ve involved gene-expression profiling by developing a ToO test (known as SUPERDx) and combined it with a variant mutational profiling test (known as Comprehensive Cancer Panel) to identify targeted treatments. The clinical utility of these tests is being evaluated by measuring the impact that identifying clinically actionable mutations has on clinical decision-making and how this information influences the clinical care of CUP patients. 

The project also seeks to establish reliable estimates for quality of life and psychosocial needs across the CUP illness trajectory and to identify similarities and differences between CUP and advanced cancer patients with a known primary at baseline. Preliminary analysis of this data has identified significant differences in experience between CUP and non-CUP patients suggesting CUP patients require more psychosocial support and specific interventions to manage diagnostic uncertainty.

The long-term objective is to build a consumer representative group that will advocate for CUP patients in driving improvements in the provision of care. We have a consumer reference group consisting of three patients and two caregivers that meet regularly to provide input and feedback on research proposals, input into grant applications and liaise with similar groups from other countries to facilitate knowledge exchange. 

There’s a lack of evidence on the patterns of care for CUP patients; however, Australian studies in Veteran’s Affairs clients have shown that patients with CUP have a higher use of GP consultations, palliative care, hospitalisations and emergency department visits three months before and after diagnosis, compared with metastatic cancer of the known primary site. 

There’s a need to understand both the cost of treating CUP and whether treatment and treatment alternatives, including those that are molecularly guided, are cost effective. Furthermore, a comparison with advanced cancers with known primaries provides a useful reference to understand whether there is an additional burden of CUP. 

We will undertake a health economic analysis that aims to:

  • Quantify the costs and timing of resources typically used in the diagnostic work-up of patients with CUP versus advanced cancers of known primaries.

  • Determine the cost-effectiveness of genomic sequencing for CUP patients versus no sequencing (usual care).

Personalised health care news

Contact the Iverson Health Innovation Research Institute

If your organisation is dealing with a complex problem that you’d like to collaborate on with us, or you simply want to contact our team, get in touch by calling +61 3 9214 8180 or emailing ihi@swinburne.edu.au.

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