Privacy Fact Sheets mitigate Disease-related Privacy Concerns and Facilitate Equal Access to the Electronic Health Record: Randomized Controlled Trial

BackgroundThe German electronic health record (EHR) aims to enhance patient care and reduce costs, but users often worry about data security. To mitigate disease-related privacy concerns, for instance, surrounding stigmatized diseases, we test the effect of privacy fact sheets (PFS) - a concise but comprehensive transparency feature - on increasing EHR usage. ObjectiveWe investigate whether displaying a PFS shortly before upload decisions must be made mitigates disease-related privacy concerns and makes uploads more likely. MethodsIn an online user 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 (acute vs. chronic). They were then asked to decide whether to upload the report to the EHR, while we systematically varied the presentation of privacy information (PFS vs. no PFS). Participants were randomly (single-blinded) assigned to one of the 8 conditions in parallel (stigma, time course, privacy information): low, acute, no PFS (52/393, 13.2%), low, chronic, no PFS (45/393, 11.5%), high, acute, no PFS (46/393, 11.7%), high, chronic, no PFS (55/393, 14%), low, acute, PFS (44/393, 11.2%), low, chronic, PFS (45/393, 10.4%), high, acute, PFS (56/393, 14.2%), high, chronic, PFS (54/393, 13.7%). ResultsThe results show that, in general, upload behavior is negatively influenced by disease-related stigma (OR 0.130, P<.001) and positively influenced when a PFS is given (OR 4.527, P<.001). This increase was particularly pronounced for stigmatized diseases (OR 5.952, P=.006). Time course of diseases had no effect. ConclusionsOur results demonstrate that PFSs help to increase EHR uploads by mitigating privacy concerns related to stigmatized diseases. This indicates that a PFS is mainly relevant and effective for users with increased privacy risk perceptions, while they do not hurt other users. Thus, implementing PFSs can increase the likelihood that more patients, even those with increased privacy concerns due to stigmatized diseases, upload their data to the EHR, ultimately increasing health equity. That is, PFS may help to realize EHR benefits such as more efficient healthcare processes, improved treatment outcomes, and reduced costs for more users. Trial RegistrationDeutsches Register Klinischer Studien DRKS00033652; https://drks.de/search/de/trial/DRKS00033652.