In “Social Networking Sites and the Continuously Learning Health System: A Survey,” the authors report findings that 94 percent of U.S. adult social media users with health conditions strongly endorse sharing their health data anonymously to help improve health care. The discussion paper and a companion commentary were written by participants in the IOM’s Evidence Communication Innovation Collaborative. The survey also finds that respondents’ willingness to share data for society’s benefit outweighs lingering concerns that sharing health data still carries some degree of risk. For instance, 76 percent of American social media users with a medical condition believe that data from their personal health record potentially could be used without their knowledge. The authors conclude by arguing for balanced policies that allow for the sales of goods and services based on users’ data, but also protect users from potential harm.
Quality and Patient Safety