Contemplating the intersection of social media, technology, and health

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?

Tagged as: Facebook, fanconi anemia, health information, long tail, Ning, rare diseases, social support, social web, socialmedia, socialnetworks, socialpulpit

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What makes an online community successful and why do so many fail?

Take the do-it-yourself social network Ning. With 1.5 million networks and 33 million members, why are only a handful of Ning networks widely popular while about 80% of the networks fail?

According to Clay Shirky, author of Here Comes Everybody, almost everything on the social Web fails. But because “failure is free” or low risk, he says, failures are necessary to allow for the few successful communities. Ning, with its low barriers to entry, has not only a shear critical mass of participants to glean the rare successes, but its creators can continually learn from the network’s failures to find evidence of what works and what doesn’t.

Shirky says it’s only when a technology becomes normal and ubiquitous that the really profound change can happen, and change, even more than we have seen already, is coming. He likens the advent of social media and the internet to a new media revolution more significant that the printing press, the telephone, or broadcast media. The largest increase in human expressive capability in our history, he says, is a result of social technology that allows two-way conversations and the ability to create groups.

Our species, natively good at group action, is using our new two-way group forming social tools as an extension of those capabilities in ways varying from the open source movement, to Flickr, to Twitter.

But, before we get into some tips for creating successful online communities, let’s review a little history.

Groups are complicated, and become more complicated as they grow. Double the size of a group and you quadruple the size of the connections among the groups. The more connections, the more costs. This is why we need organizations, whose roles are to lower the transaction costs of large groups. In fact, if an organization cannot handle the exponentially increasing communication associated with the growth of its network, it will break down at large scale, known as Coase’s ceiling. The typical approach has been to deal with this based on organizational hierarchies.

What we are seeing now is that instead of hierarchy, we have tools that make larger groups ad hoc and lightweight. We have the ability for “ridiculously easy group forming,” which Shirky quotes from computer scientist Seb Paquet, significantly reducing the transaction costs of group forming and threatening the established structure of organizations.

Shirky claims that a medium such as social media that is available easily, accessible, and group forming, is a medium with the potential to change society. He describes a ladder of behaviors to explain how much an individual needs to work to coordinate action with groups, steps through which aggregated individual action leads to coordinated group change.

The steps are sharing, conversation, collaboration, and, the toughest, collective action, in which the fate of an entire group become important to all members.

Tips for creating an online community

So what did I learn from Shirky’s book about how to create a successful online network? If I were recommending one to a client, here’s what I’d say:

· Provide value. Members should know what they can do with the site from the outset. Simply tell people what your site does and how it can benefit them.

· Make it easy to join. High barriers to entry and excessive effort to join a network make success difficult.

· Understand your audience. Go beyond market research and get at the real needs of your audience in a media environment based on two-way conversations and group forming.

· Expect two-way conversations; embrace them. The top-down one-way communication approach is over. Don’t try to employ this communication in a social network.

And this all only the touches the surface of where you can go.

What do you think about Shirky’s ideas? Have you found them relevant to your work?

Tagged as: groups, networks, organizations, shirky, socialmedia, socialnetworks, socialpulpit, strategy

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