Wednesday, July 26, 2006
Health Care, the Long-Tail, and Social Networking Websites
A little over a year ago, my younger sister joined the large number of Americans (according to the article over 25 million) with a rare medical condition. For weeks and weeks, she was unable to function -- growing weaker and more distressing shades of grey every day. Doctors kept diagnosing things and prescribing medications that failed to improve her condition. After several months and losing probably one-third of her body mass, she was finally correctly diagnosed and given the correct medication leading to a relatively speedy recovery.
My sister was in, what the article describes as, the long tail of medicine:
Since most patients are not fortunate enough to have a repository of knowledge of all rare diseases, like Dr. Gregory House, for their doctor, improving care for those with rare diseases involves allowing physicians to access the collective wisdom of the medical community more efficiently. This is where, the author of the article believes, social networking websites will help.
In healthcare, it is the left side of this distribution curve which inspires (for better or worse) Wal-Mart, Target, and others to offer "Doc In A Box" services - Allergies, Bladder Infections, Bronchitis, Ear Infections, Pink Eye, Sinus Infections, and a full battery of vaccines -- all served up for a fixed price while you wait.
On the right hand end of the curve though, the NIH Office of Rare Disease classifies over 6,000 conditions, each afflicting fewer than 200,000 Americans. Along this part of the curve, things do indeed get very ambiguous in a hurry -- both for patients and physicians. Specialization is a response to this range of ailments ("nichefication" in Anderson's terms), and brings physicians repeated cases of a particular nature --
giving them the confidence that they can routinely diagnose and treat a high percentage of these patients. However, even within a particular specialty area, cases will naturally follow a distribution curve from typical to atypical. Unto themselves -- atypical cases are just that -- one of a kind aberrations that force physicians to go outside their typical "comfort zone" of diagnosis and treatment. For each individual physician, these atypical cases feel like the exception rather than the rule. What the Long Tail suggests though, is that taken in their entirety, these rare cases actually compromise a large percentage of all medical cases. In fact, over 25 million Americans suffer from a "rare" condition.
Traditionally, when presented with a challenging case, doctors proceed as the characters on House do. They start talking with their closest colleagues about the problem and/or start searching the internet/library for help. The close colleague method is limited in the case of rare disorders because usually close ties within social networks access the same information. The internet must have substantially improved the diagnosis of rare disorders, but the article may be correct that internet searches frequently produce too much information to be processed efficiently.
The author believes that his social network website for doctors will help improve the diagnosis of rare diseases by increasing the flow of information between social networks. Social network theorists have long subscribed to Mark Granovetter's belief in the "strength of weak ties" -- the idea that close ties don't provide much new information (I already know most of what they know), rather new information comes from more distant ties who have access to the information set in other networks. One of the principles behind social networking websites is that awareness of the structure of the social networks allows individuals easier access to these different social networks. This occurs because these websites allow individuals to identify the network they want to access as well as the shortest social path to it.
Randomly contacting strangers and extracting information from them has a low probability of success; however, contacting people through people they are socially connected with or referring to the shared social connection when introducing yourself (so the person knows that their behavior in this interaction will be reported to others within their social network) should substantially improve the quality of the social interaction and the likelihood that the person initiating the contact receives what they need. As such, the author believes networking websites for doctors can lead to better diagnosis and care for people with rare disorders.
This seems pretty reasonable. I hope they are successful at getting doctors to participate and creating the forum to facilitate the spread of information.
On an unrelated note, I thought I would highlight a paragraph from the article that illustrates a point I made in an earlier post about an article on the supposed decline in confidants. I didn't think the trend seemed correct, and I argued, in part, that there had likely been a large growth in support from on-line communities. The author also believes that the internet changes the structure of social support:
On a more encouraging note, patients stuck along the right-side of the curve with a "niche disease" are using the extraordinary reach of the Web to discover that they are not so atypical after all. It's probably no surprise to THCB readers that patients are banding together around wikis, chat rooms, blogs and social networks to offer each other information, empathy, and inspiration. (This is not so different in network theory terms from when fans of a niche band find each other on MySpace). Some of these disease state patient networks are sponsored by pharma marketing, while others are grass-roots efforts, usually led by a parent or family member related to one of the patients.
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