In considering whether to participate in a health information exchange, patients want to know whether their clinical information will be shared with their insurance company and whether their more sensitive information, in addition to routine patient information, will be included.
They also want to know whether, once they have opted into a health information exchange, they can ever opt back out.
These were the findings of a survey of patients at four healthcare organizations in western New York state who participated in the eConsent Trial Project sponsored by HHS' Office of the National Coordinator for Health Information Technology. Kathryn Marchesini, a lawyer with the ONC's privacy office and the project's leader, gave a status report Tuesday to the federal Health Information Technology Policy Committee.
As part of the pilot, the ONC and its contractors prepared a 16-question survey that asked patients, "What information do you need to decide whether healthcare providers may electronically access your medical information?"
Questions receiving the strongest responses were those asking patients whether they should know in advance if joining an exchange meant that their information would be shared with insurance companies; whether their sensitive information such as genetic information, HIV status or mental health treatment records would be shared; and whether they withdraw from the exchange.
The pilot also measured the efficacy of offering patient privacy education information via tablet computers before patients made their decisions and including the consent form on the tablets.
Marchesini said in a telephone interview that the ONC hopes to wrap up the project in March and release the results, including the open-source software to run the patient education information developed for the project, to the public this spring.