Eighty percent of American adult internet users go online to search for health information (Fox 2011a), a figure that demonstrates the internet’s significance in the landscape of contemporary health care. More specifically, many people use social media applications to author narratives about their personal experiences with health and illness (Hardey 2002; Landro 2005); connect to other people with similar illnesses (Bar-Lev 2008; Josefsson 2005; Orgad 2005); and share health information, including personal data (Goetz 2008; Levina 2012). As I found in my study of women bloggers with Multiple Sclerosis (Sosnowy 2013, 2014), some develop lay expertise about their illness and assume a pseudo-professional role in communication with health professionals and in managing their care. In addition, many of them view themselves as “translators” of complex medical information for others. The participants in my study felt a responsibility to provide reliable information, and were careful to provide background sources. In other words, the production of health and social media is no longer in the hands of the “experts.” We are all the experts now.
The development of the internet and social media as a site of consumption and production of health information has been met with as many perspectives as there are stakeholders. Many people welcome the ready access to and relative ease of sharing information (Crooks 2006; Fox 2011b). Some well-known advocates, such as Dave deBronkhart (http://epatientdave.com/), and some sectors of the health care industry laud the development as having the potential to revolutionize medical practice (Eytan 2008). Other health professionals see it as an overall positive development, but acknowledge that it can spread misinformation or inspire false hopes (Cline & Haynes 2001). Finally, some scholars argue that enthusiasm for increased patient participation masks disciplinary practices that shift burdens of care onto individuals, and construct informed consumerism as emblematic of neoliberal citizenship (Rose and Novas 2005). In a similar vein, feminist scholars have examined discourses of empowerment online, noting that while the internet can provide important forums for women’s empowerment (Daniels 2009), including writing about illness experiences such as breast cancer (Orgad 2005), the internet is not an “inherently empowering technology” (Pitts 2004, p. 34). Alongside providing social support, it may reproduce problematic social messages and norms associated with coping with illness (Ehrenreich 2001; Pitts 2004).
This mixture of enthusiasm and caution in the current discourse around health and social media leaves ample room for critical discourse among scholars, health professionals, and patients. It is currently being debated and practiced in digital spaces, as well as the doctor’s office. Examining these discourses through the interdisciplinary lens of environmental psychology demonstrates the intersectionality between social science inquiry and health care, revealing areas of overlap as well as contradictions. It also opens numerous opportunities for innovative methodologies using digital networks and platforms, and provides a rich field of data. Because my current research focuses on blogs and online communities, this bibliography is weighted toward scholarship on health and blogging. Scholarly works, as well as important work in the popular press, about other social media platforms and health are being produced rapidly and will no doubt enrich this bibliography as it grows.