Better and more inclusive care is dependent on including patient perspectives or “voice.” Yet, patient voice is rarely included in the design, modification or implementation of digital health systems (DHS) such as patient portals or electronic health records. As a result, DHS are rarely embraced by patient populations who could have the greatest benefit.
For Two-Spirit, transgender, nonbinary and other gender-diverse people (Trans+), this lack of voice is made worse by inaccurate DHS representations of gender identities. Negative healthcare experiences can discourage Trans+ patients from attending or returning for future visits.
Our collaboration includes Trans+ people, Trans Care BC, and other researchers. We will co-develop a program of research that brings patient voices into the design, modification, and implementation of DHS. The project extends our ongoing work to improve representation in DHS. This project is timely given the provincial government’s recent implementation of Health Gateway, a patient-accessed DHS allowing patients access to their health records.
Team members: Lorraine Grieves (Provincial Health Services Authority); Marcy Antonio (University of Victoria); Francis Lau (University of Victoria); Lindsay MacNeil (Trans Care BC); Quinn Bennett (Trans Care BC); Kelly Davison (University of Victoria); Roz Queen (University of Victoria); Aaron Devor (University of Victoria); Patient Partner TBA (Community Member)