Background: Escalation in genetic testing is identifying increasing numbers of individuals with high-risk mutations who require life-long, risk-mitigation programs. Adherence to optimal risk-management programs saves lives, empowers life choices and is cost-effective. However, some individuals experience psychological, socio-economic, geographic, and health system-based barriers to care without specialist support. These result in preventable morbidity and mortality and reduce the personal and clinical benefits of testing. Some clinical genetic services (CGS) offer telephone or survey-based follow-up programs, but these are inconsistent, and cost- and time-intensive.
Aims: The goal of this study is to develop the first generation of “GenCare”: an AI-powered virtual online platform functioning as a multidimensional CGS champion to enhance personalised care for patients living with genetic disorders. GenCare will support
- bidirectional responsive communication between the CGS and patients, including collecting and integrating patient data into CGS databases,
- incorporate AI-based algorithms that will use these data to automatically assess and identify patients at risk, to optimise and enhance care delivery.
Methods: GenCare is being co-designed and development from experiences and preferences captured through iterative focus groups with all stakeholders. The first stage of eliciting GenCare attributes determined by stakeholders is complete. The paper prototype assessment is underway. Conclusions: This proposal is currently focussed on individuals with a high familial cancer or cardiac disease risk. GenCare will be a highly scalable digital solution to optimise clinical wellbeing of people living with a high-risk disease predisposition and support CGS to respond quickly to individuals’ needs.