Privacy Fact Sheets for Mitigating Disease-Related Privacy Concerns and Facilitating Equal Access to the Electronic Health Record: Randomized Controlled Trial

Abstract

Background: The German electronic health record (EHR) aims to enhance patient care and reduce costs, but users often worry about data privacy and security. To mitigate disease-related privacy concerns, for instance, surrounding stigmatized diseases, we test the effect of privacy fact sheets (PFSs)—a concise but comprehensive transparency feature designed to increase users’ perceived control over their data—on increasing EHR use in a simulated online study. Objective: The study aimed to investigate whether displaying a PFS shortly before upload decisions must be made mitigates disease-related privacy concerns and makes uploads more likely. Methods: In an online survey study, 393 German participants from the recruitment platform Prolific were asked to interact with a randomly assigned medical report that varied systematically in terms of disease-related stigma (high vs low) and time course (TC; acute vs chronic). They were then asked to decide whether to upload the report to an EHR click dummy, while we systematically varied the presentation of privacy information (PFS vs no PFS). Participants were randomly (single-blinded) assigned to one of the 2×2×2 conditions (stigma, TC, privacy information). Results: All 393 participants were randomly assigned to one of the following groups: low, acute, no PFS (n=52, 13.2%); low, chronic, no PFS (n=45, 11.5%); high, acute, no PFS (n=46, 11.7%); high, chronic, no PFS (n=55, 14%); low, acute, PFS (n=44, 11.2%); low, chronic, PFS (n=41, 10.4%); high, acute, PFS (n=56, 14.2%); and high, chronic, PFS (n=54, 13.7%). The results show that, in general, upload behavior is negatively influenced by disease-related stigma (odds ratio [OR] 0.130; P