Feds Seek To Educate Patients On Info Sharing

7 Portals Powering Patient Engagement

Using a combination of guidelines and open-source software, the U.S. Department of Health and Human Services is trying to encourage healthcare organizations to obtain "meaningful consent" as part of the process of sharing patient information online.

Although the government's bigger push has been for "meaningful use" of electronic health records and the creation of state and regional health information exchanges (HIEs) for sharing those records between institutions, these innovations also raise questions about giving patients more control over how and with whom their information is shared. As defined by the HHS Office of the National Coordinator for Health Information Technology (ONC), meaningful consent means giving patients more options, along with education on what those options mean. A patient might elect not to have their data shared or only allow sharing under specific circumstances, such as a medical emergency.

The eConsent Toolkit announced Tuesday is derived from a pilot project in Western New York state that wrapped up in March, which looked at the use of tablets for interactive education and also as a means for patients to record their choice from among the options offered.

[ Patients want complete access to -- and the option to edit -- their medical records online. Read Patients Seek More Online Access To Medical Records. ]

As explained in a post on the Health Affairs blog, "The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule generally permits, but does not require, covered health care providers to give patients the choice as to whether their health information may be disclosed" -- although states have the ability to make their own privacy rules. The HHS guidelines also talk about the distinction between opt-in rules, where patients must make an affirmative choice to allow sharing, and opt-out rules, where data will be shared unless the patient specifically objects. Although opt-in would do more to protect patient privacy, the published guidelines don't express a preference for one over the other.

What HHS is sharing is a toolkit that providers and HIEs can use as a starting point for developing a meaningful consent program. In addition to a set of guidelines and sample videos for patient education, ONC is releasing an open-source software product called the eConsent Story Engine, which can be used to deliver interactive presentations on different scenarios so patients understand the circumstances in which their information might be shared. The same software can then be used to record their consent, including an electronic signature.

Based on the New York trial, ONC learned that patients wanted to learn more before being asked to make a choice on whether to consent to the sharing of their information. However, patients -- and computer users in general -- will often click OK on a form asking their consent to a long list of terms and conditions without really reading it or understanding it. The point of the interactive software is to make the choice meaningful. The designers of the program tried to present the information in a more interactive, engaging, and clear way before displaying the screen with consent options.

"As patients become more engaged in their health care, it's vitally important that they understand more about various aspects of their choices when it relates to sharing their health in the electronic health information exchange environment," said Joy Pritts, ONC's chief privacy officer, in a statement for the press release.

Follow David F. Carr on Twitter @davidfcarr or Google+. His book Social Collaboration For Dummies is scheduled for release in October 2013.