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February 10, 2006

Atrial Fibbers

My brother Bill has a condition called atrial fibrillation.  My friend Jeff Jarvis also has atrial fib.  Jeff describes an incident as “a convention of Mexican jumping beans is staging a revolt somewhere south of my sternum.”  It’s easy to understand why it is upsetting to have your heart suddenly and palpably beat to a different drummer.

Since Billy’s an MD and Jeff is an uber-blogger whose buzzmachine.com is very widely read and widely quoted, there’s a chance they’ll be able to do something to help find causes, cures, or palliatives for this somewhat frightening and somewhat mysterious malady.  It’s all based on the blogosphere being a two-way street.

As Jeff posted today, he and Bill are interested in collecting both survey forms AND anecdotal evidence from people with afib and those who treat them.  Anecdotal evidence is usually frowned on by scientists; but, if there’s enough of it and if it’s mined properly, it can be invaluable in finding in finding elusive correlations,

Since blogging and commenting on blogs and in forums gives the willing a way to communicate at almost no cost (assuming they already have a computer and an Internet connection), collecting huge amounts of data is cheaply doable – just depends on having enough willing data donors.  One of the tools to analyze anecdotal data can be the search engine indexing technology which is already so much a part of our lives.

If we let the indexer decide which words co-occur in anecdotes, we eliminate the danger which so often hampers traditional research – preconceptions.  Also, as Jeff points out, statistical techniques can eliminate the coincidences and crackpot theories – even outright spoofing – which is bound to be contributed as well.  This is data mining with the most noble of purposes.

Even if nothing is found but clues, that’s a great start.

If you have experience with atrial fib and want to help, here’s how to get started:

  1. read Jeff’s posts in his category afib.
  2. if you want to post something right away, do that as a comment on one of these posts.
  3. if you are a blogger yourself and are writing about afib, please use the category afib so your writing can be found.  Make sure your posts are tagged with afib in Technorati and elsewhere.
  4. if you use del.icio.us or some like tagging tool, tag relevant articles you read with afib.  Of course fine to use other tags to further define.
  5. if you’re a digg or pligg (medical digg) user, digg or pligg articles you think are relevant.
  6. be sure to comment on Jeff’s post or mine if you have more ideas to contribute on how to do this.
  7. Keep reading buzzmachine.com to look for the survey form and further developments.  I’ll link to major posts on this subject there from Fractals of Change.
  8. If you want to know what’s being posted about afib, you can subscribe to this url http://www.technorati.com/watchlists/rss.html?wid=295728 to get the latest as gathered by Technorati.

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