Starting in the Middle
Clay Shirky has described the nature of social networking as a sort of concentric framework. A person who has 500 Facebook friends or 700 LinkedIn connections doesn’t necessarily view herself interacting with the entire network as a whole. Rather, people tend to operate from a vantage point starting with the self, then they follow a sequence of decreasing importance: “First me, then my friends, then the friends of my friends, etc.” Communities grow by ancillary association.
Although the above could be stated in reference to any group-based interaction, it applies especially to the cultivation of online peer groups with respect to personal wellness. Questions abound concerning the potential and influence of social media marketing in the life science vertical, and the answer may very well lie in the discovery of communities of common practice. Just last week, for instance, an article in Forbes described how social tools such as Twitter, Facebook and Second Life are changing health care.
The article cites a number of examples. The Mayo Clinic has begun tracking small-segment redistribution rates on Twitter related to a study on gluten intolerance. A select number of bloggers were then provided copies of the study and permitted access to advance data usually reserved for journalists, thus widening the reach of information across audience segments. On the consumer side, the social networking site Patients Like Me operates as a community-based support group for members within various disease state and therapeutic categories. Other instances cited include the proliferation of virtual health facilities providing education, training, congregation and awareness.
The article goes on to mention how various community groups are emerging on YouTube to advocate or refute controversial topics. The risk, of course, is that such opportunities for dialog allow for the dissemination of information that may be unregulated, unfounded or potentially false. The provision of free communication theoretically stipulates that everyone is permitted a voice, no matter if or to what degree the source is medically credentialed. In practice, it’s much more complicated; those who have worked in the pharma space for any length of time can easily predict the governance issues likely to emerge.
One could argue the use of social technology to manage one’s health is a growing consumer necessity. In his book Everything is Miscellaneous, David Weinberger discusses the changing role of the physician as expert. At one time, we simply followed our doctors’ advice without question. With today’s technology, health care is much more community focused simply by the accessibility of the stream. We want to share empathy with others who have been in our situation: What are the side effects of this medication? Has anyone tried this alternative therapy? I’ve just been diagnosed and I don’t know what to expect. We rely more on our private villages, made up of colleagues, relatives and friends, to help us understand and manage our individual states of wellness:
It took a few years of widespread Internet access for the medical profession to get used to the idea that while we would continue to grant our doctor sole authority over our treatment, we were no longer willing to let her be the sole source of information. If you are diagnosed with diabetes, you will very likely find yourself browsing the Web, trying to understand how the disease will affect your life. The links will lead you into official sites from accredited experts, but the links will also take you on an unpredictable tour of blogs and discussion boards where diabetics talk about the daily particularities of life with the disease. That information doesn’t fit in the Physicians’ Desk Reference. It exists only because it was created, one leaf at a time, by a world of people with their own interests.
Linked from the Forbes article is a published study on the use of Second Life for health purposes, the findings of which underscore the importance of community within a digital environment. All concerns regarding medical and legal governance apply to Second Life, with the additional complication that all content in SL (including the environment itself) is user-generated and its design principle is based upon the idea of anonymous engagement.
The study cites 68 relevant health sites, with more than half dedicated to awareness, education and support. Virtual environments are an idea platform to disseminate health information due to their dynamic presentation, synchronous communication tools, scientific visualization potential and immersive interactivity features. These functionalities make virtual worlds uniquely ideal as a collaborative learning tool, which provides an opportunity for genuine, authentic practice to influence real-life behavior:
Studies show that Second Life has real-life behavior implications. One study indicates that the behavior of users even correlates to the physical appearance of their avatars. Researchers at Stanford University’s Virtual Human Interaction Lab coined the term “Proteus Effect” to describe this phenomenon, as they found that the height of the avatar affected the users’ assertiveness and behavior within the virtual setting. … [T]hey will have an awareness and understanding that was previously lacking and respond to situations differently as a result.
The use of 3D virtual space as a peer-based distribution network has great potential and benefit for groups of people who wouldn’t otherwise meet in real life. Consider such examples as peer groups dedicated to enhancing quality of life for those with spectrum disorders or other cognitive disabilities. While there are still many questions to be answered on a purely regulatory level, the trend appears to be one of dovetailing: how to meld a corporate-endorsed media initiative with the priorities of today’s health care consumer.
The challenge facing health care marketing today one of balance. How can a communications effort properly steward the brand, enhance credibility of data, support conversation and remain detached from negative or uneducated commentary? Perhaps the answer lies somewhere in our ability and willingness to endorse the formation of digital peer groups. I keep thinking of a dictum that was passed to all staff during my time working for GlaxoSmithKline R&D, four simple words we were asked to use as a principle to guide our daily work: “focus on the patient.”