A virtual clinical champion empowering optimal, equitable care for individuals living with genetic disorders

Start Date

19 May 2022

End Date

15 November 2024

Project Participants

Peter MacCallum Cancer Centre, Swinburne University of Technology

Status: Completed

Tags: artificial intelligence (AI), cancer care, clinical decision support, clinician engagement, consumer engagement, genetic disorders, genomics, outpatient services, primary care, risk stratification, specialist services, virtual care

Opportunity 

For the 10% of the Australian population who live with a genetic disorder, many may face geographic, psychological, socioeconomic and health system barriers that limit their access to and engagement with ongoing specialist support and risk management. Clinical genetics services (CGS) also face growing demand while resource and capacity remain constrained. 

This project sought to address barriers to optimal care for individuals living with genetic disorders through the development and integration of a scalable digital solution enabling clinical genetics services to better provide ongoing care and engagement. 

Project Objectives  

The aim was to develop and pilot a scalable, multidimensional and accessible digital platform “GenCare” to provide easy, streamlined access to specialist CGS expertise for people living with a genetic disorder.  

The objectives were to:  

  • Co-design an end user-centred platform aligned to patient and CGS clinician needs, and trial the platform to provide evidence it is an acceptable and usable application.  
  • Seamlessly integrate data collected in GenCare with existing electronic medical records  
  • Develop Artificial Intelligence (AI) models for person-centred care based on individual and disease management criteria, and to proactively inform about eligibility for clinical trials 
  • Develop a digital navigator role within the CGS to monitor GenCare use and to help integrate it into wider mainstream genetic testing follow-up.  
  • Explore commercialisation pathways and establish foundational business case for wider deployment of GenCare as a follow-up program for Australians living with genetic disorders. 

The project used a co-design methodology to engage with consumers and clinicians, successfully delivering a functional GenCare prototype that was shown to be usable and acceptable to patients and clinicians based on pilot testing outcomes. The research explored clinical data architecture and AI-enabled risk identification capability in comprehensive technical documentation that demonstrates the potential to increase CGS capacity and improve equitable access to specialist care and information for people living with inherited genetic conditions. The project also developed a commercialisation strategy toward the long-term objective of building a national prospective clinical follow-up program to empower and support Australians living with genetic disorders. 

GenCare has demonstrated the potential to improve patient experience, support equitable access to specialist care and increase the efficiency of clinical genetics services. The platform provides a scalable model for delivering personalised support and could help healthcare services in future manage growing numbers of patients requiring ongoing genetic condition risk management and care. 

Integrity, Excellence,
Teamwork and Authenticity

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