July 24, 2018

The Value of Social Network Data for Surrogate Decision Making

Sites such as Facebook, Twitter, and LinkedIn provide ample user data and patterns that are stored in the user’s timeline and activity history.

Surrogate decision making for patients without decision-making capabilities or advance directives can be a challenging task to take on, particularly considering that many surrogates have to differentiate between their personal values and what the patient would have preferred. In an article published in the Journal of Medical Ethics, social networking site information, or the information gathered from patients’ social networking sites before their loss of decision making, may be an approach surrogates can use in making end-of-life decisions.¹

According to surveys, approximately 60% of social networking site users frequently comment on health and medical preferences. Sites such as Facebook, Twitter, and LinkedIn provide ample user data and patterns that are stored in the user’s timeline and activity history. These data may hold potential usefulness among surrogates who make decisions; however, limited information exists on the ethics surrounding social networking site data usage in these situations.²  

Supportive arguments suggest that information from social networking site can allow patients to retain autonomous, even when a surrogate is making clinical decisions for them, considering their social networking site comments are more than likely an accurate reflection of their beliefs. Arguments against using social networking sites for surrogate decision making involves the validity and value of the information, with many opponents suggesting the data may not be entirely authentic of the patient being represented. Identity fraud, for instance, may further authenticity issues.

Additionally, it may be likely that social networking sites may elicit activity or communication that is not normally routine for the individual in everyday life. Users of social networking sites may also make conflicting statements regarding health and medical decisions throughout their lifetime, resulting in information that is of little quality or use in surrogate decision-making. Additionally, the patient’s right to privacy may be of concern; however, this concern enters a gray area, considering most comments on social networking site are knowingly made public for everyone to see.

The authors suggest that physicians should "approach this topic when assimilating information regarding patient preference" and "the best interest decision making should, at this point, involve family members or surrogates as such requests may seem outside the purview of conventional physician-family interaction."

References

1. Siddiqui S, Chuan VT. In the patient’s best interest: appraising social network site information for surrogate decision making [published online June 28, 2018]. J Med Ethics. doi: 10.1136/medethics-2016-104084
2. Boyd DM, Ellison NB. Social networking sites: definition, history and scholarship. J Comput Mediat Commun. 2009;13(1):201-230.