National Academy of Medicine

Social Networking Sites and the Continuously Learning Health System: A Survey

By Francisco Grajales, David Clifford, Peter Loupos, Sally Okun, Samantha Quattrone, Melissa Simon, Paul Wicks, Diedtra Henderson
January 23, 2014 | Discussion Paper

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.

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Disclaimer: The views expressed in this paper are those of the authors and not necessarily of the authors’ organizations, the National Academy of Medicine (NAM), or the National Academies of Sciences, Engineering, and Medicine (the National Academies). The paper is intended to help inform and stimulate discussion. It is not a report of the NAM or the National Academies. Copyright by the National Academy of Sciences. All rights reserved.