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I confess that I haven't used this journal as much as I should have in the past year mostly because I was exploring Facebook and how we could use it for IC. It was a good year. We have several groups on Facebook and an official Interstitial Cystitis Network page. I've got about 1400 IC friends over there but, to be totally honest, I don't like Facebook very much. It's time consuming. But, more importantly, it's a bad platform for health information.
Facebook has significant problems with quality of information and the lack of moderation. For example, I once saw a patient ask an IC patient if she should have heart surgery. Yikes! Still other patients don't cruise the web, they don't read books. They just read Facebook chatter and think that that is good information. Unfortunately, it's often not.
A good example is something that happened on one IC group where one patient reported that "end stage IC" was a fatal condition... terrifying patients that IC could kill them. Absolutely NOT TRUE. Yes, there can be a very rare case of an "end stage bladder" but even that could be treated with surgery.
One of our own moderators read a posting on Facebook from a patient who was have serious suicidal thoughts. Unfortunately, there was NOONE moderating that page and some else unbelievably posted personal information about this patient, completely violating their privacy. It took 24 hours to find someone who could do a welfare check on this patient. Facebook has few effective controls that can reach out to teens or anyone else struggling with serious depression.
But, what makes Facebook scary at times are the "trolls" people who go on power trips by hurting or putting down others. We've certainly had this happen a few times on the ICN over the years but the advantage we have is that we can shut them down immediately. Facebook, on the otherhand, has few controls. This isn't about controlling content... it's about protecting people from others who, in many cases, may be mentally ill.
So, for the past few months, we've been having big debates about how to use Facebook for support and, honestly, many credible groups, businesses, pharma are backing away from Facebook and, if they use it, are only doing so for basic announcements. I refer to Facebook as the "wild wild west" of the internet and it worries me.
What do you think??? Are you using Facebook?? Have you ever been upset by things that you've read or experienced on Facebook. I would love to hear your opinions and experiences, both good and bad. Make no mistake... I love being able to meet so many IC'ers over there. They are great but the format just seems flawed.
Jill
Facebook has significant problems with quality of information and the lack of moderation. For example, I once saw a patient ask an IC patient if she should have heart surgery. Yikes! Still other patients don't cruise the web, they don't read books. They just read Facebook chatter and think that that is good information. Unfortunately, it's often not.
A good example is something that happened on one IC group where one patient reported that "end stage IC" was a fatal condition... terrifying patients that IC could kill them. Absolutely NOT TRUE. Yes, there can be a very rare case of an "end stage bladder" but even that could be treated with surgery.
One of our own moderators read a posting on Facebook from a patient who was have serious suicidal thoughts. Unfortunately, there was NOONE moderating that page and some else unbelievably posted personal information about this patient, completely violating their privacy. It took 24 hours to find someone who could do a welfare check on this patient. Facebook has few effective controls that can reach out to teens or anyone else struggling with serious depression.
But, what makes Facebook scary at times are the "trolls" people who go on power trips by hurting or putting down others. We've certainly had this happen a few times on the ICN over the years but the advantage we have is that we can shut them down immediately. Facebook, on the otherhand, has few controls. This isn't about controlling content... it's about protecting people from others who, in many cases, may be mentally ill.
So, for the past few months, we've been having big debates about how to use Facebook for support and, honestly, many credible groups, businesses, pharma are backing away from Facebook and, if they use it, are only doing so for basic announcements. I refer to Facebook as the "wild wild west" of the internet and it worries me.
What do you think??? Are you using Facebook?? Have you ever been upset by things that you've read or experienced on Facebook. I would love to hear your opinions and experiences, both good and bad. Make no mistake... I love being able to meet so many IC'ers over there. They are great but the format just seems flawed.
Jill
I don't worry about who sees what or if some moron is going to start trouble of any sort here. I've seen those trolls in action and it's appalling. Most just want to get you riled up and reply to them so they can keep on perpetuating their nastiness, lol. 
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