Feds Seek To Educate Patients On Info Sharing

U.S. Department of Health and Human Services offers guidelines and open-source software that healthcare institutions can use to help patients understand what they are agreeing to.

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...

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...