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

Opportunity

To address the barriers to optimal care for individuals living with genetic disorders, this project will develop and integrate a scalable digital solution into clinical genetics services (CGS).

Project Objective

The aim is to develop and pilot a scalable, multidimensional smartphone platform “GenCAre” to provide access to specialist CGS expertise for the 10% of the Australian population who live with a genetic disorder. The objectives are to: 1. Design a user interface and functionality to align with CGS and Enduser needs and preferences, ensuring an acceptable, interactive highly usable application. 2. Develop seamless integration of management outcome data collected in “GenCAre” into electronic medical records (from Enduser to CGS) 3. Develop Artificial Intelligence (AI) models to target person-centred care based on individual and disease management criteria, risk of non-adherence, and eligibility to clinical trials through proactive messaging. (from CGS to Enduser) 4. Develop a “digital navigator” role within CGS to monitor “GenCAre” output/use and integrate it into wider mainstream genetic testing. 5. Undertake a cost consequence analysis from CGS perspective of the impact of “GenCAre” in the context of BRCA-related breast cancer compared to current survey and telephone based clinical review program. Ultimately, the long-term objective is to use “GenCAre” as the foundation on which to build a national prospective clinical follow-up program to empower and support Australians living with genetic disorders.