July 26, 2006
TECH/QUALITY/PHYSICIANS: Healthcare and The Long Tail - Searching for help when you’re on the wrong-end of the curve by Jim Walker
Two things have got my attention recently. The first is the concept of the long tail in medicine, which I've thought about alot since my fiancee got an odd condition (shortness of breath) that didn’t match any of the symptoms the text books said were the symptoms of the usual shortness of breath. She endured several doctors diagnoses of diseases that went from the wrong to the ridiculous (panic attacks that lasted for weeks?). After much, much digging around on the web she found a patient testimonial from someone who had long term shortness of breath and related it to caffeine. Yup, drinking coffee was causing the problem. But because it was a rare symptom of what's not normally a medical problem she had to go through the annoyance (and worry) of being wrongly diagnosed and put on drugs she didn't need, and now she can’t drink coffee or eat chocolate—her life must barely be worth living!
The second is a plethora of people writing to me telling me about XYZ product that is the greatest since sliced bread and would I please praise it on THCB. One such person is Jim Walker from new physician social networking site MyMedwork. Usually when I request that said person writes a piece putting their service in context I get self-serving marketing jargon, and when I request that they instead really write a general interest piece I never hear from them again. In contrast Jim wrote an excellent explanation of the Long Tail in health care. Here it is:
Healthcare and The Long Tail
In a recent THCB post, author Maggie Mahar writes that “Ambiguity haunts medical care”. She goes on to quote Dr. Atul Gawand – “Uncertainty is the core predicament of medicine . . . the thing that makes being a patient so wrenching, being a doctor so difficult and being part of a society that pays the bills so wrenching."
It’s important to note that for a great many cases, ambiguity is not really an issue. This is because the distribution of medical ailments follows a curve very similar to Chris Anderson’s “Long Tail”, with a great many common “blockbuster” ailments stacked up high on the left-hand side of the curve. For those not familiar with the Long Tail, Anderson describes how Amazon, Netflix, and other online retailers sell lots of the usual blockbusters, but actually derive more total volume from 100s of thousands of niche products. 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.
This is problematic, because in general, physicians – and the healthcare system as a whole - are not well prepared for dealing with the many and inevitable rare cases. In fact, statistics show that the median time to diagnosis of a rare condition is six months, and the average is almost three years! When faced with an atypical case, most physicians will begin to consult the literature, and/or confer with their colleagues. Ironically, it is at this moment that the Long Tail shows up again in a quite surprising and often detrimental fashion. This is because recent studies in social and information analysis reveal that our network of professional contacts and information sources follows the same type of distribution curve. In other words - we all generally tend to connect with the same 15 or 20 trusted colleagues on a regular basis, and we all gather our information from a limited stream of trusted sources. Beyond this trusted core lies an entire world of other people and sources we rarely connect with, if at all – our own social and information “long tail”. Generally, using a network of trusted sources (while tuning out most everything else) is actually very efficient at handling a majority of our day to day needs. For the atypical situation though, just when we really need to break out of our habitual way of doing things - our trusted sources generally don’t deliver. They’ve all been drinking from the same information punch bowl.
So, we have to head out to the right-hand side of the curve – and begin finding and evaluating people and sources we don’t really know. For a student or researcher, this type of research can become a time consuming, challenging, but often rewarding journey. But, for a patient and physician confronted with a puzzling and life threatening illness, the stakes are much higher and time is at a premium. In today’s system, the physician often must address this dilemma by referring the patient to some other specialist – with the hope that maybe they will have the knowledge or connections to form a proper diagnosis and treatment protocol in a timely manner. The patient of course, must continue to move from specialist to specialist, their rare case still in hand.
Not surprisingly, the Internet has proved both boon and bane in this situation. Patients and their families are using the Web to dig into the latest medical research. However, matching a worried patient or family member against 1,706,532 Google results is usually a prescription for both confusion and high blood pressure.
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.
Physicians are also turning online in large numbers. Manhattan Research reports that more than 600,000 physicians are using search engines to find medical information. Are they searching about how to treat their day-to-day typical cases? Very unlikely. Chances are, they are researching an atypical case. However, if two physicians search – for example, on “phylloides tumors” at Google they each receive the same list – but have no easy context by which to evaluate the 13,600 + search results!
Social network software may be one way to help physicians overcome this “search result overload”, allowing them to move faster and more confidently outside their circle of trusted sources and down the long tail, especially when faced with a “rare” condition (which as we’ve noted – is not such a rare occurrence in the aggregate). For example, within MyMedwork , search priorities start with the individual physician’s network of trusted colleagues and work outward from there. In other words - each physician gets a totally unique list of search results based on who in their own extended network is likely to possess useful information. Because the medical community is so small, it turns out that physicians are usually quite closely linked to any given article or study, they are just not aware of the connection. By viewing the social network connection within their search results – they are then in a position to more accurately judge the quality of the information – either by checking with the in-between link (i.e. “Hi Dr. Jones, I notice you’re connected to Dr. Watson – what do you think of his study on phylloides tumors?”) – or by contacting the physician directly (i.e. “Hi 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 just beginning to be explored and understood. It is already clear though, that as the entire healthcare field continues to undergo dramatic change, and “atypical” rare disease states become ever more typical, ambiguity and uncertainty will continue to impact medical decision making. In this environment, the need to develop richer and more varied sources of information, and the value of far-reaching, online social trust networks will become increasingly apparent for patients and healthcare practitioners alike.
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July 26, 2006 in Physicians, Quality, Technology | Permalink
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