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Consumers Desire Greater Control Over Their Electronic Health Information

Patients in New York, a state where patients must actively consent to having their data accessed through , are generally supportive of the electronic sharing of and are willing to have their automatically stored in an ; however, they want to have control over the privacy and security of that information.

The telephone survey of 170 residents found more than two-thirds of people surveyed were willing to have their health information automatically stored in an HIE. Most respondents, however, wanted safeguards against unauthorized viewing of their information (86 percent). They also wanted to be able to see who has viewed their information (86 percent), to be able to stop electronic storage of their data (84 percent), to be able to stop all viewing (83 percent) and to be able to select which parts of their health information are shared (78 percent).

Among the approximately one-third of patients who were uncomfortable with automatic inclusion of their health information in an electronic database for HIE, 78 percent wished to approve all information explicitly, and most preferred restricting information by clinician (83 percent), visit (81 percent), or information type (88 percent).

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 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.

“Health Care Consumers’ Preferences Around Health Information Exchange”
By Rina V. Dhopeshwarkar, MPH, et al
Weill Cornell Medical College, New York, NY


September/October 2012 Annals of Family Medicine

American Academy of Family Physicians