Topic: updated website coming soon

This is a perfect time to solicit suggestions from our dear members.  Please share with us thoughts, ideas, and suggestions for changes on the discussion board.  What could we improve upon? 
Thanks much,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: updated website coming soon

Hi Marion. I know this may be a biggie but my suggestion would be to take the names of all who have Passed up to say 5 years ago and put just their names in one file which would clear the site from older advise as we have seen new treatments and etc that are changing more often making those posts passé. Guess what I am trying to say is always keep the names like a Memorial page but the posts may be passé. It would also allow for easier searching for help when newbies join in. I swear I know what I am trying to say, blame it on the Remicade! P.S. would release a ton of space on the computer. If Rick could think of a way to do this, I would do it.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by marions Tue, 19 Nov 2013 17:51:09)

Re: updated website coming soon

Thanks, Lainy. Keep the great thoughts coming our way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: updated website coming soon

I actually think it would be a shame to lose all the old posts and insights.  Many of the procedures don't seem to have changed that much, and of course, many of the older posts contain tons of wisdom.

One member recently (2000miler??) used the older posts to create a database of patients/procedures/outcomes that I think helped him make a treatment decision.  Without the older posts, that analysis would not have been possible.

I can certainly see a rationale to get rid of older information (and it is often terribly sad to go back through them), but my intuition tells me that would represent a big loss to many current and future members.

Jason

Re: updated website coming soon

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

6 (edited by marions Tue, 15 Oct 2013 13:54:16)

Re: updated website coming soon

Jason....great thoughts.  Why Wiki?  It is our intent to produce similar results by providing special categories for each member, if they so choose.  We keep track of site visitors and according to our records, we have immense global outreach (in the hundreds of thousands.) We are listening.  This is the time to bring good ideas forward.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: updated website coming soon

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

Re: updated website coming soon

Great, Jason.  This is similar to what Carl had suggested. I will bring the above to the attention of the CCF board members.  Wow....this is so exciting.  We have the greatest, smartest, kindest members.  I am humbled and grateful to be part of this incredible group.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: updated website coming soon

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!  smile

Re: updated website coming soon

Rick I have the utmost confidence in you! But then what do I know about computers? I just think any guy who would cut his beard off for CC has to be a good guy! LOL...I already know you are tops!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: updated website coming soon

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

Re: updated website coming soon

Our new site is built on a completely different platform, (one that will encourage editing and updating.) 

Once its up and we get the kinks worked out, I'd totally be willing to look at doing another wiki.  (but that's really a decision for the foundation board.)

13 (edited by thebompie4 Sat, 19 Oct 2013 12:24:49)

Re: 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.

Re: updated website coming soon

Great input. 
Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: updated website coming soon

As Rick continue to update our site (behind the scene) and we appreciate your ongoing input I thought to point out that you are able to retrieve all postings from a particular individual in the following way:

For example: Lainy

click on her name in the signature box
a new window will appear
scroll down to: Posts and topics
chose:
View all Lainy's posts
or
View all Lainy's topics 

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER