updated website coming soon

I would love an easier way to find/see if posts have been updated (not sure how)–

for example when i sign into facebook it shows me how many comments
have been added to any post i commented on and who said what.

here it is often impossible to find an old post and see who said what.

Meaning there is nothing to notify “ME” that “I” have responses
to MY question and my post. Does this make sense? (I know it shows
“new activity” on posts, but this site has no way to notify me of
answers to my questions)

Posts that I have asked questions on seem to get lost in the shuffle
and it is something I know is possible (again not sure how, i am 100%
NOT computer savvy) because other message boards i belong to
offer this option (or it just “is” something that updates automatically
and shows me when I sign on.)

I would also LOVE the option of a personal message box here on the
board without having to thru emails.

I belong to a handful of other message boards that have done this
for years—so i know it is possible and seems to be a “built in” feature
to many message boards I belong to.

that is what i can think of for now.

Hi Rick,

Great to hear that a wiki is possible. It sounds like you guys have some experience with what does and does not work.

In my (very limited) experience, a successful wiki starts with one (or a few) people that set up the structure and begin the updating/editing process. At that point a few more people see the potential and show interest in adding and changing the wiki. Those folks are given editing access, and they then contribute articles and changes.

As the wiki improves in scope and quality, more and more are interested in learning how to make updates, and it grows from there.

I’m not sure if restricting the contributor list is possible with the updated website, but I think that is critical to keep out the bots and make it successful.

Hopefully there is a way to make it work.

Jason

Hey Jason,

We actually did have a wiki for almost 2 years, 2007-2009. No one used it, and users never made any updates. (except for spammers that edited it about 10 times a day.)

Of course, that was 5 years ago, I’d imagine our users are more tech savvy now, it will still take some diligence to keep the spambots off. I’d leave that up to the board if they want to try something like that again.

The good news is our new site design will make it easier to make updates, so expect a site that will remain current!

Why Wiki? Great question!

I probably will not do it justice, but here are some quick thoughts on why wiki

Wiki is a technology that allows members (likely after an approval process) the ability to alter/change/enhance a web page quickly and easily (an immediately). It is often used in collaborative projects to help aggregate information.

When is wiki really useful?
-When key information needs to be regularly updated
-When key information is held by a diffuse group of people.
-When maintaining/updating all the information is too big a job for one person/group, but is a manageable job if spread out across the membership.

Just to give one recent example, consider the threads on metal vs. plastic stents.

I am not sure if the updated website will have information on metal vs. plastic stents, but there was a ton of great info in the recent thread. Within a day I could have turned that information into a “metal vs. plastic” stents wiki page. Within a week there would probably be enough comments / changes so that the “metal vs. plastic stents” page would likely be one of the best sources on the web for real life experiences and information on this issue. As time passed, the page could be further enhanced with experiences and paper references, etc.

I am not sure how frequently the website gets updated, but I would not be surprised if it occurred every 1-3 years. So the difference I see is that a wiki would allow world class information to be user-created in days, whereas a process that relies on traditional web updates may take years (and likely stent information does not even make the cut)

As a second example, consider clinical trials. I could imagine a wiki page that lists the 10-15 clinical trials that have CC patients participating. I think it would be great if we could get those members to give updates as to how things are going on a particular trial. It is maddening how little information is available, and how frequently clinical trial experiences and results never make it into the literature. With a wiki, members would have an organized place to record and compare their experiences with others.

I could go on, but I think the key thing is that we have lots of members with important information. However, it is difficult for those members to incrementally add to the knowledge base their key piece of information. People are busy, and people dealing with CC are often really busy. If it is not easy to contribute your piece, the information is often lost.

A wiki makes capturing and organizing all the little bits of information much easier and efficient.

My intuition is that it would be a huge boon to our members, and I am hoping to figure out a way to make it happen.

Jason

On a positive note, I am doing some research into how to host and support a wiki page. I am hoping that ultimately a lot of the new patient, procedure and clinical trial information can be member created and kept up to date via a wiki.

More on that as I learn more!

Jason