Topic: Proof of concept -- Experience sharing wiki

Hi everyone,

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). 

Jason

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.

Re: Proof of concept -- Experience sharing wiki

Fantastic, Jason.  Is it possible for you to give us step by step instructions regarding our input?

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: Proof of concept -- Experience sharing wiki

This is an interesting project. Thank you for the work you've put in, Jason. I haven't used this kind of wiki and am not clear how to post on it. Seems like its easiest to copy and paste posts already written on the CC blog than rewrite our story. I'm also a little confused as to the advantages/differences between searching the categories of info on the CCF discussion board and the wiki?  Again, kudos for for passion and efforts!

Willow

Re: Proof of concept -- Experience sharing wiki

I took a quick peek at the wiki page and I like it!  It's a great way to get the information that is sometimes lost in threads here in the discussion area.  I like the way you have started to organize it as well.  Great idea and great job Jason!

I do, however, see it as a place to capture "information" and not "experiences".  I think people's experiences are captured well on this discussion board and the wiki could quickly become a duplicate of what this board does already and become unwieldy as well.  My thought is that the Wiki should have "information" and not "experiences".  Perhaps links back to individual board posts with their personal experiences (like you have on there already for Percy's posts) would be best.

Obviously, like you already have, there is a caveat/disclaimer about the information posted.  The citations back to individual experiences on the CC discussion board should also alert people that the information is supported by patient personal experience and not research (when that is the case).  And citations and references to supportive research should be added as well when appropriate (as other Wiki pages do).

Just a few first glance thoughts on my part.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Proof of concept -- Experience sharing wiki

Thanks for that Jason, great work. I assume that all of this was created by you and is run by you as well? I've seen these Wikia links showing up for CC in my googling and research over the last few weeks/months and wondered where they were all coming from. Now I know it is you and Percy!

I'll have a good look around it when I get a bit of time and get back to you with any thoughts etc if you like.

Thanks again for all of your work on this!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Proof of concept -- Experience sharing wiki

Thanks for the comments and suggestions.

Marion:
Editing the wiki is pretty similar to making a post on these forums. 

When on an existing wiki page:

You can either choose to edit the whole page by pressing the blue "edit" button at the top of the page, or you can edit a specific section by clicking on the small "edit" link by that section.

When editing a page, a message box will appear that contains the current content of the page or section.  Make your changes in this box.  I like Wikia because they use an editor that makes editing similar to using MS Word. 

Once done adding your edit, you can either "preview" your changes or "publish" your changes.  NOTE:  nothing changes until and unless you publish your edits.

Creating a new wiki page:

When you are on a new wiki page (say by clicking a "red link") you are asked if you want to start with a blank page or use a template.  I usually start with a blank page.  It is probably easiest to first go to an existing page and copy the content (press edit, select all, copy with crl-c).  Now you can go to your new page and paste (ctrl-v) the old page content and use that as a template.

It might sound complex, but it is really very easy.  Again, no worries if you make a mistake.  Rolling back changes or updating pages is easy for me to do.

Willow:
The main advantage I see is that the wiki is organized into more specific categories, and the wiki pages themselves are further organized into research vs experience areas.  For example, figuring out where in the "chemotherapy" forum one would go to find out how gemox is affecting patients could be daunting.  With the wiki, you select the "chemotherapy" page which then provides a link to a specific "gemox" page.


Randi:
You make a great point.  I was a little bit hesitant to try and add research and science to the wiki mainly because I don't feel expert enough.  I also am concerned that the forum members may not feel comfortable contributing to that type of wiki.  Organizing patient experiences seems both very helpful to future patients, but also something everyone can contribute to if they want.

I take the point though that experiences could become unwieldy, and patients may be more interested in information that is backed up by experiences.

Perhaps I should organize each treatment page into three sections:

Section 1 -- Treatment summary (with external links to summary information) and available Research (with links as well)

Section 2 -- Experience summary.  This is where I or whoever is working on the particular page tries to summarize all of the available experiences into helpful information.

Section 3 -- Patient experience details.  This is more of the patient experience free-form that I have illustrated so far.

What do you think of that type of organization?

Gavin:
Have you really seen wikia links??  You are the google whisperer!  I had thought it was under the radar smile

Jason

Re: Proof of concept -- Experience sharing wiki

Yes Jason I have seen your wikia page! smile They started showing up in my googling about a few months or so ago max. First they seemed mostly blank pages, lacking content etc but the pages were there. Then they started showing up each day with more content per page. I do my googling for CC stuff each day and a few times at least each day and use the 24 hour search function. That way I get to see everything that google throws up for CC over a 24 hour period and find all of the new stuff that comes up. And as you added new pages and new content they started showing up every now and again!

I was going to link some of the stuff that I found here, but wasn't sure of the source and I only like posting links here on this site if I know the source etc.

Great job once again for all of your work, and now I know that it is down to you and Percy! smile

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Proof of concept -- Experience sharing wiki

Good job Jason and also a thanks to Percy.  I have just taken a quick look and I think you two are doing a great job with this.  When I have time I plan to look into it in more detail. 

If anyone could find it I knew it would be you Gavin.  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Proof of concept -- Experience sharing wiki

Hey Gavin,

Just to clarify, I was trying to get some of Percy's great information into the wiki, but I don't think Percy has had a chance to look at the wiki yet.  Hopefully, Percy can take a look at the info and add / edit anything that needs fixing.

Best,

Jason

Re: Proof of concept -- Experience sharing wiki

Hi, Jason,

You are right,  since it takes so much time to answer  the questions from this discussion board (ie:I spend  average at least 1-2 hour for  each member in order to provide some answers ,especial to those new members with medical questions.) I did not visit the wiki until tonight. I did take a quick look  on your wiki and it looks good. I will talk to you next week for more details .

The key question I think is do you want the wiki to be more medically related or experiences related?  and what will be the difference  or relationship between this discussion board and the wiki if any?
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Proof of concept -- Experience sharing wiki

Thanks for that Jason.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Proof of concept -- Experience sharing wiki

Jason,

Thank you so much for taking the time to compile this info in one place.  It is very helpful and so kind of you to do this while taking care of your wife going through this.

Peace, Love & Hugs to you and Andrea.

Mary

Re: Proof of concept -- Experience sharing wiki

Percy,

You ask a very good question:

"The key question I think is do you want the wiki to be more medically related or experiences related?  and what will be the difference  or relationship between this discussion board and the wiki if any?"

Frankly, I am not sure the answer.  It could be both, or it could be one or the other.  As I hear experiences from other CC warriors, and as I do my own research, I just have a strong need to record that information somewhere so it hopefully can be helpful to others.

During those times when I feel like I need to work on it, the wiki gives me a way to (at least feel like) I am making a contribution.

How it ultimately evolves, is anybody's guess.  I am open to any and all suggestions though smile

Jason

PS -- Just as an example, I updated the clinical trials page to include the information Marion posted on financial assistance from lazarex.  I also added the "cryoablation" link you posted to the "other procedures" page.  It only took a couple of minutes, and maybe it will be found by someone down the line.

Re: Proof of concept -- Experience sharing wiki

Hi, Jason,

I will talk to you next week when we will meet.
sometimes good things come in pieces  especially with people like you  who have good intentions to improve  something that is dear to your heart.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.