“Not just data: Privacy in the digital age” (de Souza 2014) and “Empowering patients through social media: The benefits and challenges” (Househ, Borycki, & Kushniruk 2014) both highlight an important implication of the lack of privacy in social media, confounded by corporate tracking of internet and social media use, that is specific to the context of health information-related use of the internet and social media. De Souza identifies this broadly as “a danger that interested parties may form judgments about us based on conceptions of our online personas rather than our real selves” with the specific example of a “log of one’s online searching…be[ing] used as the basis to deny medical insurance coverage.” Househ, Borycki, & Kushniruk identified a study that “reported that discussing their condition presents a risk for teenage patients, as it may impact their ability to establish relationships or obtain jobs or insurance.”
This presents a conundrum for users of social media who are using or would like to use social media platforms as a space to connect with others who share similar experiences–to talk about their experiences and day-to-day existence, the things they find challenging and the small triumphs they accomplish. Having such a space is particularly critical for people who have rare or uncommon diseases/disorders, stigmatized diseases/disorders, or disabling diseases/disorders that inhibit their ability to find others like them in their own geographical area or their ability to even leave their home to try to find others like them. For patients like these, the internet and social media offer what may be the only option for connecting with others for support with their illness. The lack of even a moderate guarantee of privacy for their interactions on the internet and social media presents them with a choice between remaining isolated but with their privacy intact, or sacrificing their privacy and potentially jeopardizing their future economic stability in order to have some small measure of human contact. It is a choice that I do not think is fair to ask anyone to make, yet the current state of privacy on the internet and social media forces them to make it.