Privacy Fact Sheets mitigate Disease-related Privacy Concerns and Facilitate Equal Access to the Electronic Health Record: Randomized Controlled Trial
Listed in
This article is not in any list yet, why not save it to one of your lists.Abstract
Background
The 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.
Objective
We 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 user study, 393 German participants 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).
Results
The 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.
Conclusions
Our 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 Registration
Deutsches Register Klinischer Studien DRKS00033652, https://drks.de/search/de/trial/DRKS00033652
