The eHealth Trust Model: Understanding the Patient Privacy Perspective in a Digital Health Environment

Patient privacy is an issue on the forefront of health information exchange (HIE) discussions as patient privacy concerns are often cited as an implementation barrier. While protecting patient privacy is crucial in healthcare, the limited evidence suggests that patient privacy needs may be overstated by the healthcare community. Through three interrelated studies, this dissertation argues that patient privacy perspectives are more nuanced than suggested in the patient privacy discourse. A greater understanding of their perspectives is required to ensure patient-centric privacy policy decisions are made about HIE. The first study in this dissertation is a systematic review that explores how patient privacy has been characterized in the empirical literature on HIE. The review highlights context-dependency of the patient privacy perspective and identifies knowledge and methodological gaps in the current evidence. In the second study, patients with mental health conditions were interviewed to understand their views on privacy, trust, personal health information (PHI) regulations, and HIE. The study found that privacy concerns varied among the patients; moreover, trust and perceived benefits were equally important factors in their decision to share their health data (i.e., PHI). The findings from these studies were used to develop the eHealth Trust Model (eHTM)—an evidence-based theory-grounded privacy framework. The proposed eHTM was then validated and improved through an eDelphi study, where a panel of privacy experts and patients provided feedback on the theoretical relevance and applicability of the model constructs. The final product of this dissertation is a content-validated eHTM, which provides an evidence-based, theory-grounded approach to conceptualizing the patient privacy perspective. The purpose of the eHTM is to guide future policy-oriented research that provides knowledge users with insights on how to implement innovative uses of PHI while meeting patient expectations of privacy.Ph.D