Putting patients at the center of health information exchange design: An exploration of patient preferences for data sharing

Abstract

Background: Despite the many benefits of Health Information Exchange (HIE), Studies reported patients concerns about the privacy and security of sharing their health information. To address these concerns, it is important to understand their needs, preferences, and priorities in the design and implementing HIE systems. Objective: The aim of this study is to investigate patients’ preferences for HIE consent option and examine the extent to which they are comfortable sharing the different parts of their medical records. Method: A self-administered survey was conducted. The survey was administrated online and the total number of respondents was 660 participants. Results: The most popular option selected by participants for sharing HIE information was to share information with their permission once when they register (33.3%) followed by the option to share their information temporarily on demand during their clinical visit (23.8%). The types of information which participants were willing to share the most were general data such as age, weight, height, and gender, followed closely by data needed for medical emergency. In contrast, the information which participants were less likely to share were data related to financial status or income, followed by data related to sexual disease, and mental illnesses.