Building on the findings of Projects TRS1-1.3.1, TRS1-1.3.2, and TRS1-1.3.3, this new study will validate whether the proposed development approach and resulting tool improve the likelihood of adoption, usability, and user agency among migrant populations navigating the Canadian healthcare system. It will evaluate the effectiveness of the PHD tool in simulated healthcare settings, identify remaining challenges related to digital and health literacy gaps, and share findings with key stakeholders, migrants, settlement groups, healthcare professionals, policymakers and academics. The foundational phases of our theme clusters have established critical realities within the healthcare ecosystem in Canada, with Ontario as the focus. First, migrant groups have unique privacy concerns driven by varying degrees of digital literacy, language barriers, and distinct cultural requirements regarding institutional trust. Second, expert interviews and surveys with migrant populations reveal that there is complexity introduced through conventional centralized, institutionally-held HIS that can magnify challenges experienced by migrant populations. They impose a “triple adaptation” burden (navigating new cultural, healthcare, and digital systems simultaneously) and inadvertently strip migrant patients of agency over their own health information. In response, complementary cluster projects have begun prototyping a decentralized, self-sovereign identity (SSI) based Personal Health Dossier (PHD).

This project will serve as a critical validation phase of this overarch initiative. While our previous work identified the socio-technical requirements for a blockchain-based PHR and documented the system challenges of centralized systems, this project shifts focus directly to end-users, immigrant and migrant populations in Canada. The study will apply self-determination theory, which suggests that human motivation and well-being are driven by psychological needs for autonomy, competence and relatedness (Assadi and Hassanein, 2017). This study will evaluate whether the PHD system has the potential to genuinely restore patient agency. We will examine how this prototype system influences a user’s desire for data privacy, confidentiality and sovereignty versus institutional reliance. The approach to this study will have representatives from migrant populations interact with the PHD system that has been developed in stages to work towards validating the system’s capacity to empower members of migrant populations, mitigate privacy anxieties, and facilitate equitable healthcare participation. Ultimately, this research will bridge the gap between technology and culturally responsive health information systems.