Social Media & the Future of Health 2.0

Before coming to MIT to study with the Comparative Media Studies program and to apprentice with the Education Arcade, I worked in public health. My research was primarily policy-driven, trying to understand consumer needs and desires through qualitative methods. One of my areas of interest was information technology, specifically “new media,” and its potential as a communication tool.

Recently, my former boss asked me to help him prepare for a panel talk on social media and its potential communication role in getting people to use electronic personal health records. This project provoked a lot of questions for me, the most important of which is the role of authority in social media. Some of the richest social practices exist in social networking sites, and they can be a powerful network, pushing information in a viral manner. It's not a coincidence that health care is now taking the lead of corporate marketers in looking for a way to disseminate educational information into these communities, since youth are often leading edge technology users and a gateway of new information for their families. But as danah boyd has shown in her work, social networks are places of public/private performance and identity building. They are adolescent/youth spaces, and serve as reprieves from the authority of institutional structures created by and for adults.

Public health professionals are generally very aware of the paternalistic nature of their practices and try hard to balance that by bringing communities into the whole process of intervention. But I found myself extremely ambivalent towards pushing educational information through youth-focused social networking because of the nature of these interventions itself. Most professionals who are working to create these educational campaigns are backed by legitimating institutions like research hospitals and universities. Their authority is different from simply being doctors. They are backed and framed by layers of power that are impossible to divest, and that kind of establishment position, no matter how well-intentioned, may not be the right place from whence to approach youth communities. Youth are generally allowed so little autonomy to explore normal social rituals and their place in them that I'm ambivalent about further paternal intrusions into that space. Moreover, the most robust communities grow organically out of their software platforms and must be approached no less carefully than one would with any other marginal or under-served population.

Established social networking sites aside, social media seems to hold much promise for health care. It's most important function, in my opinion, would be to translate between the patient and the medical profession. One of the most important articles I read as a qualitative research student was “Culture, Illness, and Care: Critical Lessons from Anthropologic and Cross-Cultural Research” by Arthur Kleinman, Leon Eisenberg, and Byron Good. Written in 1978, this article examined the cultural disjunction between the way doctors and patients framed the same experience in the examining room. “Modern physicians diagnose and treat disease (abnormalities in the structure and function of body organs and systems), whereas patients suffer illnesses (experiences of disvalued changes in states of being and in social function; the human experience of sickness).” The value of any emergent, patient-centered health information technology, such as electronic health records, is its potential to bridge this cultural gap.

Health blogs, for example, are often written by patient-experts or patient-advocates to inform consumers about the intricacies of different health issues. These bloggers are often positioned between the consumer and the medical profession, distributing knowledge that is often perceived as having fewer corporate and institutional interests. It re-frames the issue along the axes of a patient's stakes rather than along the medical profession's stakes. Blogs may not be transparent, but they have, depending on the blogger, perhaps more easily discernible biases. You can “read” the position of the blog, which is an important part of forming trust. More important than the information itself is the source of the information and how it is framed. Social media is, in effect, filtered through people like you or that share your illness experience, and that is a kind of trust that could be incredibly helpful to any kind of educational intervention – games, social media, or otherwise.

Citations

Kleinman, A.; Eisenberg, L.; and B. Good. 1978. “Culture, Illness, and Care: Critical Lessons from Anthropologic and Cross-Cultural Research.” Annals of Internal Medicine. 88:251-258.