Some people remain unconvinced that it is not only media that benefits from passionate, committed, intelligent amateurs. But they ain’t gonna stop me. Both banking and medicine have a lot to learn from consumers as co-creators. Don’t believe me? Too bad, I’ve been doing some research…
For some more background, you might want to read my old bloglet about Google setting up Google Health portal first. Or not, it’s up to you, and not necessary.
Most of us know the story of Lorenzo’s Oil (from wiki)
Lorenzo’s Oil is a 1992 dramatic film directed by George Miller. It is based on the true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo‘s adrenoleukodystrophy (ALD).
It took mass media (a movie) to highligh the concept that WE as individuals, can often be the ones to make a difference, if our need, commitment, intelligence, luck and fortitude are at high enough levels. It seemed like a one-off story, a miracle.
But now, with the ability for online communities to work together on projects – each bringing a little knowledge to the table, there are many inspiring stories.
Scott Adams, creator of the Dilbert cartoon, had this to say about his *permanent* loss of voice:
As regular readers of my blog know, I lost my voice about 18 months ago. Permanently. It’s something exotic called Spasmodic Dysphonia. Essentially a part of the brain that controls speech just shuts down in some people, usually after you strain your voice during a bout with allergies (in my case) or some other sort of normal laryngitis. It happens to people in my age bracket.
He seems to have found a *cure* in the last day or two. It’s inspiring reading, as are the positive comments (several hundred of them). Read the whole thing here at The Dilbert Blog. I particularly like the fact that the readers rallied around and wrote poems for him (he can stop the spasms and talk normally if he speaks in rhyme first).
And now here is a little poem for you speak
To prevent your voice from again getting weakI love my job of drawing Dilbert cartoons
It’s much better than working for corporate buffoons
While others commute and sit in small cubes
I just walk 20 feet to my house number twoI’ve got a great wife and kids I adore
I really couldn’t ask to be given much more
Except for a voice that was strong all the time
So Brain form those links without these damn rhymes!
The edit for Scott Adam’s cure went through into Wikipedia within minutes.
Additional suggestions were made – word of mouth marketing for studies? How hard is it for your local GP to stay on top of things? Pretty tough I would imagine. But the community comes to the rescue:
There is a Doctor in San Diego (either at UCSD or SDSU) that studies brain mapping. I am sure he could use an extra grad student while studying your particular condition. It could help a lot of other people.
http://psy.ucsd.edu/chip/ramabio.html
This guy is awesome. There was a PBS special about his work. (note: I don’t know him or even live in San Diego, I was just really impressed with his work).
Here’s a story of Susan Barry who learnt that she doesn’t see the world in *stereo* (she was born cross eyed, surgery fixed that but the eyes don’t work in *stereo*). I quite like The Optometrist Networks “Vision Stories” site.
The only thing is, a sponsored site will limit the information posted up – no old wives tales, no “medically unproven” solutions, a severe restriction on anything that could leave anyone even slightly liable legally – so its not possible to see that thousands of people gained help from a slightly off -the-wall recommendation. On the other hand, an underwritten site that is owned and managed by the community will allow these little gems to be raised and “it worked/didn’t work for me” to be discussed.
So, to the pharmaceutical companies out there: think underwritten, not sponsored communities, ok?