Article Figures & Data
Figures
Tables
Supplemental Appendix
Supplemental Appendix. Survey Questions
Files in this Data Supplement:
- Supplemental data: Appendix - PDF file, 3 pages, 201 KB
The Article in Brief
Rina V. Dhopeshwarkar , and colleagues
Background Health information exchange (HIE), the exchange of electronic health information across health care clinicians and organizations, could help improve quality of health care. Little is known, however, about features, safeguards, and policies that would help consumers feel more comfortable about the privacy and security of their electronic health information. This survey of 170 New Yorkers about the use of electronic health records (EHRs) and HIE aims to understand their detailed preferences for the privacy and security of their health information.
What This Study Found In New York, where patients must actively consent to having their data accessed through health information exchange, survey respondents are generally supportive of electronic sharing of health information and are willing to have their health information automatically stored in an HIE; however, they want to have control over the privacy and security of that information. More than two-thirds of people surveyed are willing to have their health information automatically stored in an HIE. Most respondents, however, want safeguards against unauthorized viewing of their information. They also want to be able to see who has viewed their information, be able to stop electronic storage of their data, be able to stop all viewing, and be able to select which parts of their health information are shared. Among the approximately one-third of patients who are uncomfortable with automatic inclusion of their health information in an electronic database for HIE, 78 percent wish to approve all information explicitly, and most prefer restricting information by clinician, visit, or information type.
Implications
- The authors conclude that, given the highly sensitive nature of health information and the consequences that can occur in the event of its disclosure, patient preferences around the storing and sharing of electronic health information should be considered when developing and implementing systems, standards and policies. They advocate for consent policies that allow consumers to control what, by whom, and for how long their health information can be accessed.