Grant: Project Grant - PA: Patient-Oriented Research: Early-Career Investigator

Genome-wide sequencing (GS) is increasingly being used in routine medical care as it improves diagnosis and informs treatment. However, GS is a complex and costly service. This results in unequal access, increased wait times and inconsistencies in care. The use of digital tools to support genetic service delivery can result in a better patient experience and reduced distress associated with waiting for results and empower patients to act on medical results. Our study will develop a patient centred digital platform - The Genetics Navigator - to deliver genetic testing services and then evaluate its feasibility and effectiveness compared to usual care. The platform will include innovative strategies for pre-and post-test genetic counselling and result reporting. First, we will identify the key components of this novel digital platform and then build the educational, decisional and emotional support components. We will then conduct usability testing with a pan-Canadian sample of patients and health care providers to ensure the platform is patient-centred and optimized for a range of clinical settings. Next, we will conduct a pilot randomized controlled trial, to understand if the Genetics Navigator is feasible to use and better than usual care. Patients undergoing genetic testing will be randomly assigned to use either the Genetics Navigator or usual care that consists of meeting with genetics providers in-person. The outcomes related to feasibility include acceptability, satisfaction, and patient engagement and the outcomes related to effectiveness include patients' distress, empowerment, knowledge, and behaviour change. This study represents a significant advance in health service delivery by developing a novel, comprehensive digital platform to improve patient experience, access to less well-served communities, and clinical workflow efficiency. The shift to virtual care during the COVID-19 pandemic underscores the critical importance of this work.