Patients have questions about HIE data

Before they agree to participate in health information exchange (HIE), patients want to know who their information would be shared with, what type of information would be shared and if they could change their decision in the future, according to a survey conducted by HHS' Office of the National Coordinator for Health Information Technology.

The survey was part of research for the eConsent Trial Project, sponsored by the ONC, according to an article in Becker's Hospital Review and the results were delivered at the Jan. 8 meeting of the federal Health Information Technology Policy Committee.

The eConsent Trial Project is designed to educate patients about their options to make individual choices about whether they want their healthcare provider to share and/or access their health information through an HIE, Becker's notes. The project was launched Oct. 22, 2012 at four healthcare provider facilities in western New York.

ONC and its contractors prepared the 16-question survey for patients at four health care organizations in Western New York state, reports iHealthBeat. ONC is expected to release the full results publicly this spring.

Highlights presented at this week's meeting include the following:

  • Patients want to know how their health information would be used.

  • Patients are concerned about misuse of information, privacy and how information is secured.

  • Patients want to know what information would be shared with payers, whether sensitive health information would be released and if they can opt out of an HIE after initially giving consent.

Also at the Jan. 8 Health IT Policy Committee meeting, Farzad Mostashari, M.D., national coordinator for health IT, and Paul Tang, M.D., vice chair of the committee, outlined 2013 priorities, including information about Stage 4 of Meaningful Use, according to Healthcare Informatics.

"You might think of Stage 4 as moving toward the learning health system," Tang said, "for both professionals and patients, so that we make better and better use of data."

Other priorities outlined by the group included meaningful interoperability and exchange of data and healthcare consumerism.

To learn more:
- read the Becker's article
- read the iHealthBeat article
- see the Healthcare Informatics meeting report
- see the survey presentation