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ONC Takes on Patient Engagement in HIT

Gienna Shaw, for HealthLeaders Media, October 6, 2011

One of the key goals of the Federal Health Information Technology Strategic Plan, published last month, is to inspire consumer trust and confidence in health information technology and electronic health information exchange "by protecting the confidentiality and integrity of health information through appropriate and enforceable federal policies," according to the e-consent work order. "Informed patient choice is one way to ensure a trust relationship with patients for the success of electronic health information exchange."

The "e-consent trial" sets out to answer a number of questions about data-sharing. Among them:

  • What background information do patients desire and need when making decisions regarding electronically sharing their health information?
  • Do patients understand the choices they make? How can we determine the level of their understanding?
  • Are there means of electronically facilitating, obtaining, and recording consent to assist health care providers who are engaged in this process?

There is little research as to whether patients are adequately informed to understand the choices they make with respect to sharing health information, ONC says, while studies show that efforts to collect informed consent for treatment from patients are often inadequate and have little educational value.

"The ability to obtain meaningful consent to share health information presents similar challenges," the document notes.

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2 comments on "ONC Takes on Patient Engagement in HIT"


Barbara Wilson (10/7/2011 at 1:33 PM)
Thank you, Naomi. Well said and very true.

Naomi Giroux (10/7/2011 at 10:15 AM)
I have two points to make. First is a review of how HIPPA Regulations are being used to keep patients and their families out of the center of information and decision making. Often as patients and their advocates/caregivers try to get enough information to make decisions they are stonewalled. Electronic records could be used as yet another barrier for consumers. Second, I'd suggest more review of the studies about the lack of information sharing be conducted based on your statement. "There is little research as to whether patients are adequately informed to understand the choices they make with respect to sharing health information, ONC says, while studies show that efforts to collect informed consent for treatment from patients are often inadequate and have little educational value."