Handling Migraine misinformation - what are your rules?
As Health Activists, we frequently run into posts by community members that may feel slightly misleading to the reader. In some cases the information is blatantly off the mark altogether. I've seen community leaders deal with this in various ways that range from simply giving the correct information, to starting a flame war, to belittling those who are trying to help. How do you handle misinformation in your groups? Do you appreciate the kinder, gentler approach to patients as well-meaning people, or have you 'been there, done that' and have a greater appreciation for getting that bad information and those who carry it thrown on the first train out of town?
One reason I appreciate posting here at WEGO Health is the ability to go back and change something that I've written. There are times I realize I missed a fact, or it didn't read exactly as I'd hoped. Let's face it - I'm a pain patient, not a physician with a minor in journalism. I suffer terrible brain fog and I do take medicines that dull my mind and senses. Sometimes I'm moody. I wish I was perfect, but the fact is I am a normal human being. We humans do occasionally have bad or off days, contrary to what I'd love the world to think. At this little place on the web, I have the option of either changing my post to more correctly voice the information as I had intended, or begin a conversation that points out where my mistake was, following up with the correct information. There are times I feel either method is most appropriate and you will find my posts here are of both kinds.
As community leaders, do you prefer posting on groups where you have the option of editing or deleting information? Do you prefer sites that prefer not to let you edit or delete information that may not be exactly what you'd hoped?
Blogging (general) experts tell us not to be terribly complete in our posts because the gaps initiate a conversation with others who might want to fill in the blanks. I am however, very detail oriented. I want to be as complete as I can, because patients looking for information don't see those gaps. This can overwhelm, and doesn't do an especially good job of creating a dialog. What is your experience? Do you feel some groups are responsive to shorter, more open posting, and others to posts and replies that read more like mini-articles? Can you share examples of these communities here?
One reason I appreciate posting here at WEGO Health is the ability to go back and change something that I've written. There are times I realize I missed a fact, or it didn't read exactly as I'd hoped. Let's face it - I'm a pain patient, not a physician with a minor in journalism. I suffer terrible brain fog and I do take medicines that dull my mind and senses. Sometimes I'm moody. I wish I was perfect, but the fact is I am a normal human being. We humans do occasionally have bad or off days, contrary to what I'd love the world to think. At this little place on the web, I have the option of either changing my post to more correctly voice the information as I had intended, or begin a conversation that points out where my mistake was, following up with the correct information. There are times I feel either method is most appropriate and you will find my posts here are of both kinds.
As community leaders, do you prefer posting on groups where you have the option of editing or deleting information? Do you prefer sites that prefer not to let you edit or delete information that may not be exactly what you'd hoped?
Blogging (general) experts tell us not to be terribly complete in our posts because the gaps initiate a conversation with others who might want to fill in the blanks. I am however, very detail oriented. I want to be as complete as I can, because patients looking for information don't see those gaps. This can overwhelm, and doesn't do an especially good job of creating a dialog. What is your experience? Do you feel some groups are responsive to shorter, more open posting, and others to posts and replies that read more like mini-articles? Can you share examples of these communities here?
Tags: blogging, editing, flaming, misinformation, negative posts
Replies to This Discussion
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Permalink Reply by dindin on -
Neat topic, Ellen! When I post as a community manager (or member), I appreciate having the ability to edit what I've written because I may need to fix cranky html or spelling or even edit content.
But when I do edit for content, I'm very careful to mark where I've edited and why. It's so frustrating to go back to someone's post and find that they've significantly changed it by adding in information that wasn't there before rather than directly reply to a question someone has asked in comments.
Mistakes happen and you have to allow for that, but we ask our community members not to edit their post once someone has replied to it, nor delete posts or comments. Otherwise it can be confusing and disruptive, not to mention rude. I've seen a site which gives you 15 minutes to edit your post; I wish I could implement that.
The difference in types of posting definitely varies by community intent, purpose, feel, etc. In my Birth Control community, some questions may be a couple of sentences long while others are long enough to be put behind a "cut tag"; it just depends.
In Am I Pregnant we've got a set "questionnaire" type post we insist everyone use to start. We're assessing women's chances of getting or being pregnant, and it's just easier to say - this is the information we need to help you, and you can add anything else at the end.
Looking forward to see how others handle this.
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Permalink Reply by cherishdestiny on -
It depends somewhat on the poster and how the posting is worded (along with how often said bit of misinformation gets presented on said board). For example, to briefly go off the topic of migraines, the medication Lamictal is used a lot for seizures and bipolar so it gets discussed quite a bit on boards relating to those topics. Well, with the way some people post, you'd think almost everyone who takes the med gets "THE lamictal rash". That sentence includes at least two major bits of misinformation along with misnaming the rash. It's not "THE lamictal rash" - the rash is Stevens Johnson Syndrome. To clear up misinformation #1, Stevens Johnson Syndrome - or SJS - only happens to something like 3 out of 1,000 patients or so if Lamictal is properly titrated. Also (misinfo bit #2), SJS can happen on quite a long list of medications and while it IS serious, it's not something that happens only on lamictal or even only on prescription medications - many of the things that can cause it are everyday OTC things like Ibuprofen. So it serves absolutely no purpose to scare someone half to death that they might be about to die from "THE lamictal rash" when it's something that almost never happens and even if you do have the flamingly bad luck of getting it you're almost certainly going to escape with nothing more than a hideous rash as long as you get the rash checked ASAP upon its first signs of appearance (which hints as misinfo #3 about lamictal). So stuff like this that pops up CONSTANTLY is often swatted down quickly by someone or another.
Or the one bit of misinformation that always rankles me about migraines and that will get a snarky response out of me quite often is the assertion that "ALL people with migraines have dietary triggers". Another is the idea (that I've gotten mostly from doctors) that curing hormonal problems or going through menopause will "cure" migraines - yeah, right, ask me about my migraines and PCOS sometime... So I guess personal experience factors in too.
But if it's a total newbie that comes in posting a quip like "I read ____ over at ____, that's true isn't it because it would mean I could cure my migraines easily" over something as bogus as, for example, that all migraines are caused by nuts, aged cheeses and/or red wine...I'd be gentle in my explanation. It'd be something closer to "well, you can try an elimination diet, but do be warned that not all of us have dietary triggers and even those who do don't necessarily have those or just those items as their triggers and even with dietary triggers someone still might have hormonal triggers, light triggers, weather triggers, etc....so that source of yours oversimplified by a LOT".
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