In response to the Wall Street Journal reporting on the results of some preliminary clinical research done by Patients Like Me refuting the effectiveness of lithium to treat ALS, e-Patient Dave tweeted:
@seattlemamadoc replied quickly:
I replied as well, with my initial thoughts:
But by then it was too late. The premise had struck me: what if patient communities like Patients Like Me are somehow inherently different from other social media?
Social media is defined on Wikipedia as: “media for social interaction… the use of web-based and mobile technologies to turn communication into interactive dialogue… a blending of technology and social interaction for the co-creation of value.”
Though I haven’t left behind the idea that the basic functions (profile, public/private messaging etc.) and affordances (seeking/finding people, networking, friendship, community) are similar between the two, what are some areas of difference between Patients Like Me and Facebook?
- User Intent. Does the reason why someone joins a network matter?** Is it acceptable to examine a network through qualities about which we may have no direct knowledge? In this context, is it different to be a patient than a tennis enthusiast or a knitter? Don’t we call those networks social media? Does the nature of the community’s users change its definition?
- Data usage (i.e. a network’s reason for being). My second thought about the separation of Facebook from Patients Like Me is the usage of the demographic information collected. As evidenced by the clinical trial, Patients Like Me is somewhat of a clinical experiment. They are using the voluntarily provided patient information to be able to create a data set used to support (or challenge) other medical evidence. Do the scientific goals of Patients Like Me have an impact on its definition? But in that light, Facebook’s sale of demographic data to their marketing partners may seem an even more sinister experiment. At least Patients Like Me is generally open about it.
I am still working through the areas of difference between the two networks and their significance. And though these distinctions may seem pedantic at this point, I have a sense that seeking deeper definitions of these platforms may increase in value as the critical discourse around social media advances. As more people become aware of these tools for use in a health care context, we will require ever more robust ways of describing what, exactly, they do and why, exactly, they are having such a profound impact on so many people’s lives.
**Not to go all English-major on you here, but in a similar way that reader-response critics responded to formalism by allowing room for the “user” experience in the interpretation of a work, so formally examining a social (net)work solely as a functional piece of software may be seen as insufficient in describing its true value or experience.