One of the things I love about working in health communications in the Web era is that I get to cross time and space in bringing health information to people who are looking for it.
Recently I was working on some Web content related to Fanconi Anemia (FA), an extremely rare, inherited blood disorder that leads to bone marrow failure. I searched the social Web, and I found this Ning social network for FA awareness and this Facebook group, on which parents and patients are doing everything from fundraising to seeking social support.
And I thought, wow. This is a really cool example of the “long tail” theory.
The Long Tail
Well, maybe not. The long tail is a theory of economics. So I’m wondering: would it be completely wrong to apply it to a concept that has nothing to do with economics? The much-hyped long tail has been questioned as a business theory here, here, and here, after all. Maybe it’s less of a valid economic theory, and more of an explanation of the power of the Web to cater to small niche audiences.
The Long Tail: Chris Anderson
The long tail theory in a nutshell, in the words of its creator Wired’s Chris Anderson, says that our culture is ”increasingly shifting away from a focus on a relatively small number of ‘hits’ (mainstream products and markets) at the head of the demand curve and toward a huge number of niches in the tail.”
The main reason for this is that the Web offers unlimited choices in products and information. While a physical store only has room for so many items to sell, the Amazons and the Netflixes of the Web can afford to stock products to increasingly meet the demands of small, highly targeted audiences.
The Long Tail of Health Information
Now, back to the idea of the long tail of health information in terms of rare diseases, such as FA. Not only are there opportunities for those providing health information about rare conditions, such as NIH, to take advantage of the long tail and release all information in accessible, searchable formats, but patients can find and connect with people who have information about the condition.
If you think about your network of friends and contacts, a long-tail pattern will likely emerge. You probably talk to the same group of trusted people time and time again, and gather a smaller amount of information from countless others beyond your core group. On a daily basis, this works well, but what happens when you or your child is diagnosed with a condition like FA? Online social networks can help you find people and sources on the right-hand side of the “long tail” curve that, without the Web, you most likely would never come across.
Now, there are niche social networks such as Rare Share, for people coping with extremely rare illnesses that can put you in touch with fellow patients worldwide. We know that social support, at a minimum, helps patients cope with chronic illnesses and can even aid recovery. So, while Rare Share is not going to be the next Facebook, it doesn’t matter. The long tail of information in the social Web makes its existence possible, and hopefully, sustainable.
Well, what do you think? Am I making a leap?
