There are people in the vasculitis community talking about this very concept now. I am one of them. How to collect all this information, from so many sources, and review it so that only the most pertinent information makes it into the knowledge base, and even that is checked for relevance and accuracy.
Who is going to find all this information? It would take an army.
Or, maybe the collective computing power of the entire vasculitis community. That means you could help as much as anyone. Every patient has some kernel of knowledge that is not shared by the others. By sharing what you know, you are helping others as you help yourself.
There are many competent people out there now, looking for good information. They are starved for it so that they can treat or support a vasculitis condition. Okay, so what if we give them a place to put all their hard work? What if we let them contribute to a moderated WIKI so that the power of the many can work for the benefit of the one, and the power of the one, can work for the benefit of the many...
Sound like chaos?
Not necessarily. It has already been done. Wikipedia is just such a project. World editable, the mother of all wikis has become one of the GO TO sources of information for just about any topic one can imagine. The collective information power of all the people who contribute to the Wikipedia Project is immense.
Wikipedia is also subject to vandalism. What if we had a Vasculitis WIKI, and some moron could go in at any time and change "Methotrexate," to "Monkey Toothpaste." Well, that would not be a good thing. It would not even be funny... or not really very funny. Well, whether or not it was funny would depend on the context, would you not agree? :o)
Something as important as a Vasculitis WIKI would need to be moderated. That means that the world full of regular folks could write stuff, but it would have to pass muster from a team of moderators before getting published. It could also be gone over by a cadre of editors to glean out the typos, and misstatements, before going live on the world wide web.
Why just the other day, I said "this weekend" to a group I was addressing, when I meant to say "next weekend." One little word change and it could have meant a lot of people upset at me for driving all the way across town one week early. I mean if they had enough camping gear it might have worked out that they could wait it out, but really, that was not going to work.
My point is one little word can make a difference, so we cannot allow just anybody to hit the publish button. Really no one person should be able to do that. There should be at least two people approve something before it is considered good enough to print.
How then to discriminate between the threshers and the bailers? The threshers collect the wheat, leaving the chaff on the ground. The bailers bundle it all up and take it to market. This analogy is missing one job, the quality inspectors. A team of knowledgeable people. Medical doctors for some of the information, and experienced vasculitis patients and caregivers for other types of information. We might even recruit some crafty nurses to help too. Those nurses know stuff.
The system is fed information by the hundreds, thousands of people out there on the Internet just researching away about vasculitis. When they come across something they think is worthwhile, they submit the information to the project.
Then, some one of several people gets it, takes a look, and if it looks like something, they post it as a stub article, or attach it to an existing stub article for inclusion in a future update.
At some point a person with writing ability gets involved. They study the information, maybe do some additional research to confirm a few things, then write up a summary article to introduce the information. That summary could be a simple paragraph, or it could be a condensation of the original. That part would vary depending on the length and complexity of the summary. It would also depend on the copyrights attached to the information being summarized.
Once the summary writing finishes his or her bit, then the summary article would be up for review. Other editors in the project would try to improve it, or they would give it a pass after making sure it was not poorly done or that it duplicated other articles too closely.
With at least two people giving it the green light, the summary article, and the attendant information would be published to the WIKI for consideration as a resourse for and by the larger vasculitis community.
If we get enough of these articles, and do this for a while, then we could have the definitive source of known good information about vasculitis.
That is what some of us are talking about...
What do you think? Your comments will help guide this proposed idea.
Let me have it. Send me Email.
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org
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