Topic: Proof of concept -- Experience sharing wiki
One of the fantastic things about this forum is that it is a place where patients can both share their experiences and learn from others. Unfortunately, it can often be challenging to get at the information you want.
To make patient experiences more accessible, I have been playing around with a patient experience wiki. Please note, this is just a proof of concept. It is far from a complete! Having said that, please feel free to add any information you think would improve the wiki (lots of pages are currently "red links" meaning those pages haven't been created yet).
The proof of concept wiki is currently hosted on Wikia. However, if people think it is worthwhile, it would be fairly easy to move it anywhere (including the CCF website).
The main wiki page is http://cholangiocarcinoma.wikia.com/wik … inoma_Wiki
A blue link has some information, and the red links currently are empty.
To give you more of a feel for what it could be like, I added a bit more information to areas that either I had more experience with (e.g. the gemcis wiki page here: http://cholangiocarcinoma.wikia.com/wiki/GemCis)
or areas that I have researched patient experiences already (e.g. the NIH clinical trial experience from member mbachini http://cholangiocarcinoma.wikia.com/wiki/NCT01174121)
Percy has a number of posts with great information from his substantial experience. I was able to put some of that information up on the wiki, but there is a ton more to do here.
Anyway, take a look and tell me what you think (good or bad).
ps Please feel free to add information to the wiki. Don't worry about "messing it up." It is very easy to revert or update if necessary. Getting information from patients and care-givers about their experience is so much more important than perfect formating or the like.