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Chris Anderson coined the phrase "long tail" in 2004, in a Wired article in which he said that “products in low demand or those with low sales volume can collectively make up a market share that rivals or exceeds the relatively few current bestsellers and blockbusters, if the store or distribution channel is large enough”. Anderson attempted to explain how the Internet changes markets and consequently why some companies such as Amazon.ca and Netflix have a distribution power beyond anything previously seen. Online startups, for example, sell 'hard to find' items at low volumes instead of popular items at high volumes, and still make a profit.
Similarly, Anderson's long tail suggests that certain products with low sales volumes or in low demand are able to create a market-share that exceeds bestselling goods if the distribution channels are wide enough. Whereas it was once difficult to publish books related to specific niche interests because audiences were limited or production costs were too high, now niche markets can be collectively reached via the Internet. Even though university presses publish books in niche markets, their reach is limited without the digital reach of the Web. Keep in mind that the Internet lowers the traditional barrier to distribution because it empowers markets to connect with new audiences through social media.
The concept of the long tail can be applied to medicine particularly with respect to diseases in the long tail (or, rare diseases). Rare diseases present physicians and librarians with specific challenges particularly with respect to best evidence, treatments and lack of information.
Lack of information
This article looks at the challenges for information literacy in rare and orphan diseases. In particular, it focuses on the information difficulties faced by those living with a rare condition or awaiting a diagnosis, and health professionals in charge of their care. It highlights some of the key issues that library and information professionals need to be aware of when providing information support in such circumstances.
How is the web implicated in the long tail?
First, the read/write 'publishing' capabilities of the web allow amateurs to copy and distribute materials at minimal costs. The web eliminates the need for publishers, booksellers or other intermediaries, lowering barriers for entry into the marketplace. Before this potential was introduced, content producers were largely dependent on intermediaries to distribute their products. The web makes this possible for all traditional media - not just books. Second, the web virtually eliminates barriers of space because the web is a unlimited storefront. While a physical bookstore or library has real limitations in terms of inventory, virtual bookstores or libraries hold unlimited inventories due to the availability of digital storage space. Geographic barriers are eliminated on the web; no matter where users sign on from, it is unrestricted in access. This allows writers to reach global audiences more efficiently than would be possible in traditional media. Third, the web helps to connect people who have the same interests. However, web 2.0 tools also automate ways to connect specific content with interested audiences. This is accomplished by harnessing the collective intelligence of users, including search tools based on popularity or linking algorithms.
Impact in medicine
In healthcare, the long tail suggests that similar economic forces are at work so that big box stores such as Wal-Mart can offer "Doc In A Box" medical services such as treating allergies, infections, bronchitis, pink eye, and a battery of vaccines – all served up for a fixed price while patients wait. At the right end of the tail, the NIH Office of Rare Disease and undiagnosed diseases classifies over 6,000 conditions. Here the circumstances are ambiguous for patients and physicians. Specialization is a response to this set of ailments and brings physicians into contact with cases of a specific nature. Physicians can routinely diagnose and treat a high percentage of these patients with confidence. That said, even in a particular specialty, cases will follow a distribution curve from typical to atypical. Unto themselves – atypical cases are just that – 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. What the long tail phenomenon suggests is that taken in toto rare cases actually compromise a large percentage of all medical cases. In fact, over 25 million Americans suffer from rare conditions.
Rare medical cases in the long tail
Physicians – and the healthcare system generally – are perhaps ill-prepared to deal with rare diseases, rare health problems or undiagnosed ailments of various kinds. Statistics show that the median time to diagnosis of a rare condition is six months and the average is three years. When atypical cases are confronted, physicians consult the literature and their colleagues. Interestingly, the rare case is where the long tail reveals itself in surprising ways. Recent studies reveal that our networks of professional contacts and information sources follow the same distribution curve as the long tail. We therefore tend to connect with 15 or 20 of the same, trusted colleagues every time we need consultation, and we gather information from small numbers of trusted sources. Beyond the core of contacts lies a world of others - people and sources we rarely connect with if at all – which is our own kind of social and information long tail. Generally, using a network of trusted sources (while tuning out most everything else) is efficient at handling a majority of our day to day needs. For atypical situations just when we really need to break out of our habitual way of doing things - our trusted sources won’t always deliver because we all are drinking from the same information pool.
Heading out to the right-hand side of the curve, we find people and sources that we don’t know. For students and researchers, this research is time-consuming and challenging but often rewarding. When patient and physicians are confronted with puzzling illnesses, the stakes are higher and time is at a premium. Physicians must address this dilemma by referring patients to other specialists in the hope that they have the requisite knowledge or connections to diagnose and treat in a timely manner. The patient of course, must continue to move from specialist to specialist, their rare case still in hand.
Does the web help?
The web is both boon and bane. Patients and their families use the Web to dig into the latest medical research. However, matching a worried patient or family member against Google's results is a prescription for confusion. Patients along the right-side of the long tail with a niche disease use the extraordinary reach of the web to discover they are not atypical after all. It’s no surprise that patients congregrate in chat rooms, blogs and social networks to help each other, provide empathy and inspiration. (This is similar to when fans of a niche band find each other on MySpace). Some of these disease-related patient networks are sponsored by big pharma while others are grass-roots efforts, led by parents or family members. In the long tail, physicians turn online in droves. Manhattan Research reports that more than 600,000 physicians use search engines to find medical information. Do they search typical cases? Chances are they are researching atypical ones. When two physicians search for "phylloides tumours" at Google they receive the same list of sources but cannot always specify the context by which to evaluate results.
Long tail and health librarians
Social networks may be a way for physicians and health librarians to overcome their relative isolation in health care's long tail. For example, social networking facilitates more confident referrals for physicians outside a circle of trusted sources when faced with rare conditions (which as noted is not as rare taken as a whole). Microblogging is a space where librarians can expand on their contacts; the problem seems to be whether this technology is any better than e-mail, cellphone or any other web 2.0 tool.
Some of the tools listed below encourage building networks of trusted colleagues with physicians maintaining lists of those who may have useful information. As the medical community is small, physicians may be linked to relevant researchers and studies but may not be aware of those resources. By viewing social connections, physicians can judge the quality of information by checking social media (i.e. Dr. Jones, I notice you know Dr. Watson – what do you think of his study on phylloides tumours?). Or, they can contact physicians directly (i.e. Dr. Watson, I see you went to medical school with my colleague Dr. Jones, do you mind if I ask you a few questions about your study?).
The implications of the long tail and social network analysis for healthcare are only beginning to be explored. The healthcare field continues to undergo massive changes; as atypical, rare diseases become more typical, the ambiguity and uncertainty that accompany decision-making processes will also change. In this new environment, developing richer, more varied sources of information will be critical; watch for the value of online social trust networks for patients and healthcare practitioners alike to develop also.