The Genetics Navigator
Developing a digital platform to support patients and clinicians through the genetic testing journey
Project Description
Our study will develop a patient centred digital platform to deliver genetics services and then evaluate its effectiveness compared to usual care. The platform will include a conversational chatbot and innovative strategies for pre-and post-test genetic counselling and result reporting.
Aim 1: Platform Development
We will identify the key components of the platform (through interviews and advisory board meetings) with stakeholders and create a chatbot to provide emotional support to patients. We will then conduct usability testing with a sample of patients and health care providers to ensure the platform is patient-centred and optimized for a range of contexts.
Aim 2: Platform Evaluation
We will conduct a randomized controlled trial, to understand how our platform compares to usual care. Patients referred to genetics will be randomly assigned to receive either the Genetics Navigator (GN) or usual care. The outcomes include patients' distress, experience, satisfaction, empowerment, knowledge, perceived utility, behaviour change, and cost effectiveness.
Fall 2022 Milestones
Platform Design and Development
Pivot Design Group, our design and development partner have created the initial design of the platform and made some wireframes (PDF prototypes) of some different platform elements. They are currently creating a digital prototype that will then be used for usability testing. The prototype will be completed in Dec of 2022 and usability testing will begin in Early 2023. We will be holding some design feedback meetings this coming Dec so that the study team members can give us their feedback on our initial designs.
Chatbot Design and Development
We have made lots of great progress on the chatbot. Dr. Frank Rudzicz’s and his team has developed the natural language processing (NLP) algorithm for the chatbot and we are now in the process of integrating the NLP into a chatbot that will be embedded into the platform. The chatbot itself will interact with platform users at key timepoints - and through this interaction identify patients who may need additional clinician support. We hope to have testable version of chatbot in the spring of 2023.
Recruitment and Trial Design
This spring and summer we worked with our clinical leads at UHN and Sickkids to narrow down the recruitment populations and plan. We have also been working to refine our study measures. We have decided to add a time point three month from when participants receive their results so we can better measure the economic (health systems use) impact of the Genetics Navigator Platform.
REB Applications
We hope to have Initial REB approval for phase 2 (trial) of our study by the end of November 2022. This will includes all privacy and IT approvals needed for the study. In December of 2022 we will then begin the process of obtaining REB approval for all the recruiting sites, with a goal of having these approvals in placed by spring of 2023. All necessary contracts will also be in place by spring 2023.
Aim 1: Platform Development
Aim 2: Platform Evaluation
Next Steps
Fall 2022 Advisory Board Meetings - Wireframe Review
We are excited to show you the work we have done so far! At these meetings we will walk the team through the wireframes and ask for feedback/suggestions. You only need to attend one of the meetings. If these dates do not work or you prefer not to attend the meetings - no problem, just let us know! You are also welcome to send your feedback offline in an email.
Study Team
Co-investigators and Collaborators
Michael Brudno, Muhammad Mamdani, Emily Seto, Kevin Thorpe, Wendy Ungar, Quynh Pham, Lauren Chad, Rebekah Jobling, Gregory Costain, Hanna Faghfoury, Cheryl Shuman, Eriskay Liston, Melyssa Aronson, Josh Silver, Serena Shastri-Estrada, Maureen Smith, Frank Rudzicz, Matthew Osmond, Jordan Lerner-Ellis, Christian Marshall, June Carroll, Ronald Cohn, Irfan Dhalla, Anne-Marie Laberge, Jan Friedman, Francois Bernier, Trevor Jamieson
Study Support
Project Manager
Project Manager
Genetic Counselor
Data Scientist