The Community Engine Blog: In the Tail of the Long Tail

I just noticed an entry in Bud Gibson's Community Engine Blog entitled  In the Tail of the Long Tail. I just completed the Business Blogging Boot Camp class he mentions, and it was a very intense and rewarding experience.

If I understand him correctly, what Bud says in this post is that most blogs target very small, highly focused audiences - Long Tail audiences - and that selling to them through embedded advertising is usually a futile endeavor. What matters is the experience of communicating with other "birds of a feather". This has a lot of implications for how we can use online social networking in clinical research.

Bud's thoughts have inspired a continuation of the train of thought in my recent post entitled Relationship Capital and Centrality: Key Issues for Clinical Research?. People read blogs for the purpose of stimulation. They want new information from a source outside their immediate circle of friends and confidantes - they want to exercise what Mark Granovetter called "weak ties" in his seminal 1973 American Journal of Sociology paper The strength of weak ties.  Weak ties are those that lead outside your inner circle along tangential paths. To use an example from clinical research, you have come down with prostate cancer and no one in your entire shared circle of friends knows what you are going through.

You need to cast a wider net, but you have not exhausted the value of your inner circle. One of of the other friends in the circle is the clique's only rock-climber, and he mentions one of his climbing buddies who was also a victim, and connects you up with him. He knows a couple others, and over time you gather a circle of acquaintances with a shared compelling interest, eventually forming another circle of friends, tangential to the circle of your closest friends.

Eventually may not be good enough. Perhaps your cancer has already metastasized by the time your circle expands to where you learn of some protocol that has been in clinical trials for months now and that appears to work much better than the current standard of care. Too bad for you, because it's too late; the trial excludes patients at your stage.

Tools for social networking give you a way to hook up with thousands of others around the world who are in the same boat, across the whole spectrum of variations for this affliction. That's good.

When such online communities go unmoderated, a lot of half-truths and untruths can get propagated. If you are a researcher recruiting for a clinical trial or outcomes study, you want as many potentially qualified prospective subjects as possible to know about the study, and you want them to have no misunderstandings about inclusion and exclusion criteria, risks of participation, and the value of the study to the common good and potentially to the direct benefit of the patient. You can go to all of the many places where your prospects could hang out with each other online, in your spare time. As if you had any.

Or your institution could provide a patient portal where people can get the information they need to understand and cope with what they are or a loved one is going through, to find out what clinical trials are available, and most importantly, to network with others who share their sorrow and fear. A safe environment that offers you highly credible information, and as time goes by, a chance to help others who are even newer to the struggle than you.

It's not hard to do. All it takes is vision and commitment.