BuzzMachine

I debated whether to blog about my afib because it is (a) self-indulgent, (b) off-topic, (c) boring to most people, and (d) makes me sound like I’m in the old folks’ home already. But this is my blog and blogs are about life and so I did it and I’m glad I did, for kind folks not only gave me nice wishes and good information, but interesting conversations ensued that may actually lead to something. I got email from Bill Evslin, the Hawaiian doctor-brother of my blogging friend and online author Tom Evslin. Bill is in the afib frat but because he’s a doctor, he also has good advice — or actually, smart questions. In our three-way email exchange, the amazing Evslins wondered….

Wouldn’t there be value in getting the population of fibrillation patients to share their experiences online? The disorder is mysterious in many ways and perhaps the anecdotal testimony of these patients would help focus attention on causes and possibly effective treatment or might simply inspire those who are working on the problem. Tom started the bidding with that question. Bill responded in email:

I believe the collected wisdom of the patients themselves could shed some light on factors which cause AF and methods of treatment which have helped to ameliorate the condition. It is a very frustrating condition for physicians and patients as none of our preventive or curative treatments are good enough. What makes it ripe for research is the intermittent nature of [the condition]…

I am also quite interested in anecdotes concerning the people who got better. Science generally prides itself on staying away from anecdotes, but a large number of similar stories can push scientific borders….

My suggestion is to create a simple questionnaire that could be used to tabulate certain types of results such as, do you think certain foods triggered your symptoms? And then open ended questions concerning causes and possible cures.

I came back with this:

A survey is good and needed. But I also wonder whether there is value in ongoing narrative. What if all afib patients blogged their experience with tags so the posts could be found (they also could add posts to forums or group blogs) with limited metadata (e.g., labels for causes, treatment, etc.)? The data is freeform but with some contextual analysis, someone might start to find patterns (e.g., frequent mentions of chocolate). Similarly, doctors could blog cases, showing more or less success with various treatments or discussion of causes.

The point is that there is a narrative to this ailment. Does the internet allow us to start to capture that narrative. Yes, by its nature, it is anecdotal. But so is the ailment. That’s life.

Now one problem is that some crackpot theories could end up in this pool of information — afib caused by aliens — but the internet is good at dealing with outliers. People could vote on posts, a la Digg (or its medical cousin, Pligg), to show agreement and start to swarm around shared views; posts with more links could gain more authority.

Tom says this ability for people “to concentrate information may be one of the greatest disintermediations of all.”

So what do you think? Fear not, I won’t turn this into the afib blog. But I think that a combination of survey data and narrative using the tools of the internet to bring together all this data and experience could yield new frontiers of research and inspiration for this condition and, of course, others. Please join in…..

: ALSO: Just searching on “afib” at Technorati yielded some fascinating links. This is a wonderful medical blog, which in turn led me to lots of good medical-journal articles and also to the medical Digg and to a rate-my-doctors site. Disintermediation, indeed.