Unbiased Analysis of Today's Healthcare Issues

The Long Tail of Healthcare: Why 25 million Americans have a “rare” disease

Written By: Jason Shafrin - Aug• 10•06

The Health Care Blog has a very interesting post (“Healthcare and the Long Tail“) by Jim Walker.  Mr. Walker is a lifelong Philadelphia resident who is the Director of Business Development for the social networking site called MyMedwork.  He uses concepts developed in Chris Anderson’s book The Long Tail and applies them to the healthcare field.  Here is an excerpt:

“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 Boxâ€? 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 (“nicheficationâ€? 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 zoneâ€? 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 “rareâ€? 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!”

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