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MediaWiki for IBD/Ostomy

Posted by djcwiley, on Mon Apr 01, 2013 12:58 am
I loved all the tips I found on this site and I'm currently developing a website that will have a mediawiki for all those tips and mini lessons on medical literacy and understanding IBD for those newcomers and experienced patients who suffer from IBD.  If I can prevent just a few people from experiencing some of the worst care, pain and emotional stress I went through during my illness than it will be worth all the work.

Any other suggestions, or topics that may help ostomates that should be on the mediawiki, I would love to hear about them.  I"m a consultant professionally and I write courses for corporations and colleges so I thought I should use my skills to help others through this difficult journey.

It changed my life and literally I had to change my lifestyle which is difficult to do when you have such a passion for what you do.  I traveled so much and I miss it!

Debra
Reply by Bill, on Mon Apr 01, 2013 1:36 am
Hello djcwiley.  It's a great idea to use your skills to help others on their difficult journeys. I think you will find that by going down this route you will be embarking on a new journey of your own.  I hope it goes some way to making up for the physical journeys you miss so much.  Best wishes  Bill
Reply by djcwiley, on Sun Apr 07, 2013 3:44 am
Bill,

Thank you for your kind words and I believe the best way for me to get through this is to use my skills and be advocate for the rights of Ostomy Patients because we suffer enough with pain and psychological issues, we certainly do not need to be mistreated when we are in the er. We need to take a stand and start educating healthcare staff.

I also want to offer classes on health literacy and how to read and interpret medical records since its the future direction of health care is for patients to have access to our records.

Any suggestions would be most helpful.

Debra
Reply by Bill, on Sun Apr 07, 2013 6:07 am
Hello Debra. I just Googled IBD and note that there are a number of sites with some very useful information.   Your suggestion that other patients should have access to our records would be a contentious one and would be directly in contrast to the present position of patient confidentiality.  However, there is an acceptable way around this issue which is by way of well produced and documented research, which would retain confidentiality at the same time as retrieving relevant and useful information.  Best wishes  Bill
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