Mastocytosis and Mast Cell Disorders Wiki talk:Community Portal

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Hi All

I've been rolling this around in my brain for a while and have a little more time on my hands right now, being between Uni semesters, so thought I would float it. :) I have a background in Information Management and it seems to me that a searchable masto wiki might be a really good idea for organising all of the information we have in our collective heads and solidifying our findings and ideas.  Forgive the length of this email, I've broken it into subheadings for you...

What's a wiki?

For those of you not familiar with a wiki, it is like a mutually authored non-expert encyclopedia on a given subject that grows organically. In this case, it would be a laymans encyclopedia for mastocytosis & it's iterations: if you are IT savvy enough to write an email, you should be able to work out how to author or edit a basic wiki page in a few clicks.

By way of example of what a wiki is, there is, of course, wikipedia.org, which I'm sure you are familiar with, but there are also project wikis out there on specific subjects, which is what I am proposing, such as: http://diabetes.wikia.com/wiki/Diabetes_Wiki

I have created a blank space for us at Wikia to trial a masto wiki and I am looking for volunteers to write simple, first pass pages about anything to do with Masto based on their knowledge. A first pass at a page does not have to be perfect by any stretch: feel free to play, things can always be modified or deleted later.

What do you want volunteers to do?

Make the wiki look lived in. :) Specifically, I am after:

- authors to write out their personal "stories" (please include any medications you are on, your triggers, etc, photos are always nice if you feel comfortable)

- authors to have a first run at various topics or to create "stub" pages, on topics you want more information on, or can imagine newly diagnosed people would want information on (then other people who know more about the subject can fill in your "stub")

- volunteers with HTML knowledge (or IT savvy people) to assist me in the set up of the front page to look more like the Diabetes wiki, except with even more functionality for our requirements (think RSS feeds to search for journal articles, etc). Please email me directly if you can help with this and we will start working on a to do list (or we can start a to do list on the wiki!).

Where do I go to assist with this project?

Read "How do I edit a Page" below...

Front page:

http://mastocytosis.wikia.com/wiki/Mastocytosis_and_Mast_Cell_Disorders_Wiki (needs work, I know, feel free to spruce it up if you know HTML!)

Community Portal: http://mastocytosis.wikia.com/wiki/Mastocytosis_and_Mast_Cell_Disorders_Wiki:Community_Portal (this is in extreme pilot mode!)

How do I edit a page?

Watch this video to find out how to join Wikia and start editing the wiki: http://www.youtube.com/watch?v=rFgF1uZ5MUY

To create a page, click on the "Front Page" link above, then scroll down to where it says "Create a New Page". Have a play: remember everything can be modified and deleted so don't feel like you will break anything. In a few months after we're done playing we will clean up any rogue stubs.

One page in particular I would love to have your input to is the "Glossary" page: http://mastocytosis.wikia.com/wiki/Glossary

What acronyms and terms stumped you when you first got masto?

What kind of info would the wiki contain?

This wiki would include such information on symptoms, treatment, regional-based experts, links to and lists of the latest and historical medical journal articles and anything else you think others recently diagnosed might find relevant, like links to TMS, and other groups. This would not replace our online conversations nor any existing site: in fact it is encouraged to link to existing information where possible. Familiar threads & subjects that pop up often in the email list will just eventually also make it to the shared, central database of information that can be searched upon and modified.

What's the catch?

Wikis come with pros & cons that need to be weighed. Like all mutual authorship models, you will always butt up against the problem of shared world view: while a wiki attempts to put forth one shared world view (albeit acknowledging the debate), not everyone will agree with every page and that needs to be represented, especially as this disease is so individual. We can mitigate this by allowing respectful dissenting/different views, like Wikipedia.org does, transparency in page change audit trails, and having active monitors who mitigate. You will want to protect your real identity if you don't feel comfortable revealing it. A wiki also needs to be regularly visited and updated to retain it's currency. And of course, we all just need to play nicely. :)

Also, wikia is freeware. This means that it was free for me to set up, and free for us to populate, but there is no kind of warrantee on the software and it might not have all the bells and whistles we want. It also means we have to put up with advertising, and potentially some glitches in the system. If this wiki takes off, however, I am happy to coordinate raising funds to purchase more advanced software, some server space for us and then migrate the information in our wiki to an even better platform.

What do I get out of it?

Aside from my eternal gratitude, the eternal gratitude of your fellow masto sufferers, and all the people yet to be diagnosed there is worldwide fame to be had with your own authored wiki pages... and maybe, just maybe, the right person or medical student or researcher or specialist will read the right wiki page, and maybe, just maybe, one day there will be a breakthrough! :)

Love to hear your thoughts and suggestions… better yet, just go forth and make changes and improvements! :) This site does not belong to me, I just kicked it off... it belongs to anyone who wants to contribute in the world wide web, so please, take over!

Michelle