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

The use of social networking sites (SNSs) is widespread. As of December 2012, 67 percent of American adults with Internet access used some form of social media, and 59 percent of them used the Internet to look for health-related information (Brenner, 2013; Fox and Duggan, 2013). Through SNSs such as Facebook and Twitter, individuals might share their health experiences, such as disease diagnoses or side effects of a drug, or participate in research studies (Ramo and Prochaska, 2012). In addition to these general-use SNSs, Americans currently use a number of health-specific SNSs that permit them to connect and collaborate with other people with the same or similar health conditions (e.g., TuDiabetes for diabetes mellitus, PatientsLikeMe [PLM] for chronic conditions, or TheBody for HIV). On these sites, people share health-related information that can include blood glucose levels, mood, medication dosages, and related side effects (Wicks et al., 2012). A number of benefits have been reported by people who use health-related SNSs, including gaining a better understanding of their medical conditions, feeling in greater control of their disease management, and improving treatment adherence (IOM, 2012). Such systems also may provide less-tangible benefits, including reduced isolation, increased disease awareness, and the opportunity to harness advocacy movements for lobbying or fundraising. From a research perspective, the potential benefits could be significant, including  the use of SNSs to survey patients on the conduct of more patient-centric clinical trials;  the design of patient-reported outcome measures that matter to patients;  a faster way for academic and public health researchers to conduct observational studies; and, perhaps,  a mechanism for regulators to collect information on drug-related adverse events (Pearson, et al., 2011). Today, in the United States, the majority of health data are stored on paper or in electronic health records at medical facilities that are covered by the Health Information