Posted by akc on October 27, 2001, at 22:23:50
In reply to Re: New informed consent procedure, posted by Dr. Bob on October 25, 2001, at 8:25:39
I just want to throw my two cents in. This new procedure just doesn't seem right. While this might be "research," it is in a new forum and it is far from typical. And this new procedure is daunting.
On one level, I understand the need as a researcher for you to get "informed consent" -- hence, the quiz. But I can just imagine that in person, there must be the ability to "skim" to get through the process.
And more important is the fact that the people that until now who have wandered to PB, have come not for the "research" but for the support -- you might get the research benefit, but that is not their focus. I'm not saying this well.
My concern really is this. I can remember how hurting I was when I stumbled upon this site. I am pretty intelligent -- but emotionally, I don't think I could have handled a quiz that I had to get 100% to then participate in a forum that when I peaked, did look like it was about support. It would have been too daunting -- and I probably would have just read a few of the posts on topamax (what led me here) and gone on my way. And never have had this experience.
I just don't get the quiz. Why is it not sufficient to have the written statement? I did not realize that to have informed consent, you had to give a quiz? Is that a departmental requirement? A requirement within your particular field? From my legal way of thinking, I would think it sufficient to have a statement that then you would have a signature (and of course, an electronic signature is more than sufficient). Sure, some won't read it -- but that happens all the time -- with medical treatment, legal representation, buying a house -- people make all sorts of major decisions, decisions they know better than to make without reading the fine print, but they do it anyway.
Instead, there is this quiz. And I just see it as a huge roadblock for some people who could really benefit from PB. I think this goes back to what is this site really about -- is it research or is it support? If it is support, do you want to put a procedure in place that is going to be a roadblock?
I don't think I am making a big deal out of nothing. Just the little bit of response out of us who have been here a bit tells me this. I think this quiz thing is a really big deal. Especially for someone who is in a lot of mental and emotional pain -- usually those who are first stumbling upon PB. One of the hard things to do when your meds are messed up or you life is in shambles, is to think linear -- but yet, you ask those people to take this quiz. That doesn't mean they aren't together enough to give informed consent -- but it is one thing to give consent, another to take a quiz.
I guess my thought is that there has to be some other way to do this without the quiz. I sure hope this is not being forced upon you, so you can revisit this procedure.
akc
poster:akc
thread:315
URL: http://www.dr-bob.org/babble/admin/20010718/msgs/2236.html