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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 26 to 50 of 86. Go back in thread:
Posted by alexandra_k on December 27, 2005, at 16:13:13
In reply to Re: not primarily for research purposes, posted by alexandra_k on December 27, 2005, at 16:06:26
regarding the presentation...
unlikely as it may seem to be what if it does go horribly badly for one or more posters?
what if an old p-doc is there?
what if someone decides to be a bit 'blatent' or 'irreverant' or 'downright nasty' or whatever? what if someone asks questions seeking to establish that a particular poster doesn't really know anything about medications yet they respond to other peoples medication queries... what if they decide to soothe their ego that 'self-help' support boards perpeptuate misinformation... you might have a lot of faith in posters abilities to handle themselves but what if some people find the whole thing to be distressing?
never mind?
i just wonder because...
people seem to be doing this because they want to meet you and they want to please youbut you look out for the boards as a whole...
not particular individuals...whereas ethics committees make sure you are looking out for the particular individuals...
why can't you just write a paper?
i'll admit the very idea makes me shudder
'and here we have exhibit A'
i don't know...
Posted by alexandra_k on December 27, 2005, at 16:18:19
In reply to Re: not primarily for research purposes, posted by alexandra_k on December 27, 2005, at 16:13:13
but then i'll admit i have bad experiences of being questioned by groups of 5 or 6 p-docs at a time when i was in hospital (well, a couple p-docs plus registrars)...
daunting.
i don't think it could be anything but daunting when there is a clear role difference with 'consumer' on the one hand and 'non-consumer' on the other...
Posted by alexandra_k on December 27, 2005, at 16:51:57
In reply to Re: not primarily for research purposes, posted by alexandra_k on December 27, 2005, at 16:18:19
and when peoples livlihoods are dependent on their being the 'experts' with something unique to offer...
Posted by Dr. Bob on December 27, 2005, at 19:12:39
In reply to Re: not primarily for research purposes, posted by alexandra_k on December 27, 2005, at 16:13:13
> > > > Some members have discussed participating in person at workshops about the site, accepting an open invitation posted by Hsiung at his site to attend the 2006 conference of the American Psychiatric Association.
>
> > I wouldn't consider that research...
>
> So no informed consent then?I wasn't thinking that explicit informed consent would be needed. Posters are free to ask questions about it. And to discuss it with each other. Which might in some ways actually be an improvement on the usual informed consent process...
> Does the APA provide some reimbursement of accomodation / travel costs for 'presenters' then???
I wish! :-)
> Who is on that ethics committee Dr B?
Sorry, which ethics committee?
> unlikely as it may seem to be what if it does go horribly badly for one or more posters?
>
> what if an old p-doc is there?
>
> what if someone decides to be a bit 'blatent' or 'irreverant' or 'downright nasty' or whatever? what if someone asks questions seeking to establish that a particular poster doesn't really know anything about medications yet they respond to other peoples medication queries... what if they decide to soothe their ego that 'self-help' support boards perpeptuate misinformation... you might have a lot of faith in posters abilities to handle themselves but what if some people find the whole thing to be distressing?There's definitely uncertainty, but I don't think it'll go badly, and if it does, I think we'll be able to deal with it.
Bob
Posted by Deneb on December 27, 2005, at 19:14:06
In reply to Re: not primarily for research purposes, posted by alexandra_k on December 27, 2005, at 16:13:13
> never mind?
>
> i just wonder because...
> people seem to be doing this because they want to meet you and they want to please youI think that's about right. I want to go so I can see Dr. Bob in person. I would never do this sort of thing otherwise...too risky, too scary. I don't know how I'm going to handle the presenting part, but I really don't care as long as I get to see Dr. Bob.
Posted by Deneb on December 27, 2005, at 19:46:29
In reply to Re: participating in person at workshops, posted by Dr. Bob on December 27, 2005, at 19:12:39
> > what if an old p-doc is there?
> >
> > what if someone decides to be a bit 'blatent' or 'irreverant' or 'downright nasty' or whatever? what if someone asks questions seeking to establish that a particular poster doesn't really know anything about medications yet they respond to other peoples medication queries... what if they decide to soothe their ego that 'self-help' support boards perpeptuate misinformation... you might have a lot of faith in posters abilities to handle themselves but what if some people find the whole thing to be distressing?
>
> There's definitely uncertainty, but I don't think it'll go badly, and if it does, I think we'll be able to deal with it.
>
> BobHow, Dr. Bob? How will we deal with it? Are people going to ask questions about medications? I don't know anything about meds! Aaah!
What if the people there ask really scary difficult questions and makes us cry? That'll be really embarrassing.
How to deal?
OK, we'll just have to think, "So what if we cry? What do you think other people will think if you start crying?" Crying's not such a big deal, everybody does it. (That's what pdoc1 told me when I got upset that I cried on the bus).
Deneb
Posted by 10derHeart on December 27, 2005, at 20:56:54
In reply to Re: not primarily for research purposes » alexandra_k, posted by Deneb on December 27, 2005, at 19:14:06
I'm sure you already know this, but just in case you've forgotten...there's no reason you can't meet Dr. Bob and other Babblers in Toronto *without* participating in the small groups, etc.
Just come to whatever social events end up being planned, hang out and so forth, right? etc.
> I would never do this sort of thing otherwise...too risky, too scary<
Because I hate to think you're envisioning forcing yourself to do something you're not ready for, or aren't even inclined to do at all, because you're seeing it as sort of the "price you have to pay," and the ONLY way to meet Dr. Bob.
(Unlike me, who sees the presentation/groups, talking with pdocs as a fascinating, unique opportunity....and with the way I won't 'shut-up' once a favorite topic like Babble comes up, well...then the pdocs are the ones who'd better be worried...;-) )
I want you to have fun and come away with an exhilarating, memorable experience (as you often write about not feeling very grown-up, social anxiety, not doing lots of 'adult stuff' on your own, etc.) - including not having unnecessary anxiety over the next five months!
Nothing is set in stone. I'm sure it would be fine if you (or others) intend to participate, then change your mind once there. This is not a life-or-death sort of commitment, ya' know? :-)
I'm excited for you - and everyone else - and me if my $$ situation allows me to go. I'll be happy to sit by you for moral support, or any other kind of support. And, just in the off chance something triggers them, I have zero problem with tears - cryng is an every day thing for me (not meaning that in a bad way, either) and I'm quite comfortable with my tears and anyone else's.
- 10derHeart
aka "I ain't afraid of no pdocs!"
Posted by ClearSkies on December 27, 2005, at 22:29:49
In reply to Hey, Deneb, posted by 10derHeart on December 27, 2005, at 20:56:54
My sentiments exactly.
CS
Posted by 10derHeart on December 27, 2005, at 23:35:13
In reply to Re: Hey, Deneb » 10derHeart, posted by ClearSkies on December 27, 2005, at 22:29:49
Posted by Deneb on December 28, 2005, at 0:02:26
In reply to Hey, Deneb, posted by 10derHeart on December 27, 2005, at 20:56:54
> I'm sure you already know this, but just in case you've forgotten...there's no reason you can't meet Dr. Bob and other Babblers in Toronto *without* participating in the small groups, etc.
Yeah, I know. :-)
I also want to do the small groups thing because it is something exciting I've never done before. I want to experience new things, even scary things. Scary can be fun. :-) I'm glad I'm motivated to do this, even if most of my motivation comes from wanting to meet/please Dr. Bob.
> Just come to whatever social events end up being planned, hang out and so forth, right? etc.I want to do that too! :-)
> Because I hate to think you're envisioning forcing yourself to do something you're not ready for, or aren't even inclined to do at all, because you're seeing it as sort of the "price you have to pay," and the ONLY way to meet Dr. Bob.
I don't see it as a "price I have to pay". I see it as an exciting opportunity to do a new thing. I'm sort of glad that I'm being "forced" to do something I wouldn't otherwise.
> (Unlike me, who sees the presentation/groups, talking with pdocs as a fascinating, unique opportunity....and with the way I won't 'shut-up' once a favorite topic like Babble comes up, well...then the pdocs are the ones who'd better be worried...;-) ):-) Wow, I can't wait to hear your story!
> I want you to have fun and come away with an exhilarating, memorable experience (as you often write about not feeling very grown-up, social anxiety, not doing lots of 'adult stuff' on your own, etc.) - including not having unnecessary anxiety over the next five months!I think it is good anxiety. Makes me feel alive. :-) I think I like worrying about it.
> Nothing is set in stone. I'm sure it would be fine if you (or others) intend to participate, then change your mind once there. This is not a life-or-death sort of commitment, ya' know? :-)That's good to know just in case I'm really terrified when I get there and can't talk.
> I'm excited for you - and everyone else - and me if my $$ situation allows me to go. I'll be happy to sit by you for moral support, or any other kind of support. And, just in the off chance something triggers them, I have zero problem with tears - cryng is an every day thing for me (not meaning that in a bad way, either) and I'm quite comfortable with my tears and anyone else's.
I really hope you'll get to go! I'm sure I'm be less afraid with you around!
Deneb
Posted by alexandra_k on December 28, 2005, at 3:27:06
In reply to Re: participating in person at workshops, posted by Dr. Bob on December 27, 2005, at 19:12:39
> I wasn't thinking that explicit informed consent would be needed.
And the relevant ethics committee sees it that way too?
> Posters are free to ask questions about it. And to discuss it with each other. Which might in some ways actually be an improvement on the usual informed consent process...
maybe... but how much more appropriate would both be?
> > Who is on that ethics committee Dr B?
> Sorry, which ethics committee?hmm...
wiki just keeps on changing...i guess there would be an ethics committee to check that there is a process of informed consent for people participating in research. there should be procedures for obtaining that... and consideration of whether 'informed consent' can be given... lets suppose someone managed to get day leave from psych hospital to come along to the presentation and things went badly... were they in a position to provide 'informed consent' when they were under section? how about making an informed decision regarding participation? assessing possible risk etc? people are inclined to trust you you know... yet are you accountable for your conduct? it's not as simple as you think it will probably be alright so it will be alright. an ethics committee might see it differently... sounds like you aren't giving them the opportunity to consider it...
or...
who decides this isn't research?
> While Hsiung states that he no longer conducts research at the site and his administration of it is no longer reviewed by an Institutional Review Board, he continues to link to his research papers and book, continues to advise contributors that he "may publish case studies on his web site or in a book or an academic journal," and continues to make professional presentations based on the site. He has even stated that this Wikipedia article may be a handout at such presentations.
?
> I don't think it'll go badly, and if it does, I think we'll be able to deal with it.
well... if you think people are likely to see it that way... then why not do it by the book with informed consent?
you would have to do this if you were dealing with transcripts of what they were saying would you not?
Posted by alexandra_k on December 28, 2005, at 3:28:21
In reply to Hey, Deneb, posted by 10derHeart on December 27, 2005, at 20:56:54
> I'm sure you already know this, but just in case you've forgotten...there's no reason you can't meet Dr. Bob and other Babblers in Toronto *without* participating in the small groups, etc.
i remember going to camp as a teenager. i was really keen to be one of the first to arrive and one of the last to leave because i didn't want to miss *anything*
nope nope nope...
Posted by gardenergirl on December 28, 2005, at 4:36:04
In reply to Re: participating in person at workshops » Dr. Bob, posted by alexandra_k on December 28, 2005, at 3:27:06
Hi alex,
I'm confused. How is participating in a professional presentation considered research?gg
Posted by pseudoname on December 28, 2005, at 11:13:26
In reply to Re: participating in person at workshops » Dr. Bob, posted by alexandra_k on December 28, 2005, at 3:27:06
> > While Hsiung... [excerpt from Wiki about Babble's Internal Review Board (IRB) history]
> ?The beginning of the "informed consent" quiz, the designation of Babblers as research subjects, and the involvement of Bob's IRB is here (Jan-Oct 2001): http://www.dr-bob.org/babble/admin/20001124/msgs/315.html
The history in that thread does not reflect what the Wiki article currently alleges. (For one thing, it seems that the IRB only reviewed the question of whether Babble was "research"; there was no ongoing supervision...)
As to having Bob's IRB review him inviting his research subjects (Babblers) to Toronto, it apparently took over 8 months for them to answer about Babble in the first place. So, maybe they wouldn't get to this question in time?
They could consider it in time for future meetings (2007 & on).
Posted by NikkiT2 on December 28, 2005, at 12:30:52
In reply to Re: Hey » 10derHeart, posted by alexandra_k on December 28, 2005, at 3:28:21
I'm really confused as to why you think Dr Bob needs to get informed consent from people who will b e presenting, as themselves, at the conference.
I regularly present at psychiatric conferences and have never, ever had to do anything like that before.. They're presenting the "user's" side of PB, not participating in research.
Nikki
Posted by pseudoname on December 28, 2005, at 13:02:59
In reply to Re: participating in person at workshops » alexandra_k, posted by gardenergirl on December 28, 2005, at 4:36:04
> How is participating in a professional presentation considered research?
In my gut, I think Bob is likely to use the Toronto APA experiences as part of what he may eventually write up for scholarly publication about Babble, even if the workshop itself is not "research". Bob is likely eventually to report, for example, that X-many Babblers came and to summarize what some said. How could he NOT report about that??
So I think the workshops could, technically, fall inside Bob's overall cyber-therapy / Babble research work. I should quickly add that I think that's fine.
I think all of the applicable requirements of informed consent can be met just by discussing potential pitfalls and alternatives, like we've started. There's an "Informed Consent Checklist" here: http://humansubjects.stanford.edu/medical/consentcheck.html
We can put together a list like...
•You may run into your former pdoc (Yoiks!) or others who may recognize you.
•Questions from the attendees will probably be friendly but there's a risk that some may feel nonsupportive.
•Dr Bob may later write about the workshop.
•Attendees may later write about what you say.
•There is an extremely low risk that someone hostile to Babble may show up and try to embarrass presenters.
•You can also meet Dr Bob & other Babblers in Toronto without being in the workshop.
• ?Even if we disagree that workshop participation could ever fall under "Human Subjects Research", we can all agree that such a list is possible & good.
Posted by pseudoname on December 28, 2005, at 13:06:06
In reply to Re: Hey » alexandra_k, posted by NikkiT2 on December 28, 2005, at 12:30:52
> I regularly present at psychiatric conferences and have never, ever had to do anything like that before.. [...]
> NikkiNikki,
Do you mean you've presented as a patient / research subject? Or do you mean as a student / professional / affiliate?
Posted by NikkiT2 on December 28, 2005, at 14:08:28
In reply to Question » NikkiT2, posted by pseudoname on December 28, 2005, at 13:06:06
As a "patient".
I am quite heavily involved with the "service user" movement in the UK, and have often presented at conferences on my experiences and experiences of others, and also do training for professionals on what its like to be using services and to be mentally ill. I also do "consultancy" work for the government, and have been involved in the production of governmental policies and laws. All thats the unpaid side of things, as I actually now work as a project manager for a really fantastic personality disorder service.
(I'm not as great as that even begins to make me sound by the way.. I've just got a bit of a gob on me *L*)
So, sorry to ramble, but yes, it was as a patient.
Nikki x
Posted by pseudoname on December 28, 2005, at 14:14:10
In reply to Re: Question » pseudoname, posted by NikkiT2 on December 28, 2005, at 14:08:28
Posted by alexandra_k on December 28, 2005, at 18:41:20
In reply to Re: participating in person at workshops » alexandra_k, posted by gardenergirl on December 28, 2005, at 4:36:04
> How is participating in a professional presentation considered research?
I was figuring that what babblers have to say is the 'data'
I mean...
Dr Bob has started a thread asking posters to write about their experience of babble and that was considered to be research and required informed consent.
but maybe talking is different to writing?
maybe using written 'data' to write a paper / seminar is different from requesting verbal reports and going no further with it?
dunno
Posted by alexandra_k on December 28, 2005, at 18:43:25
In reply to Babble's IRB history » alexandra_k, posted by pseudoname on December 28, 2005, at 11:13:26
Ah...
> OTOH, one type of research that can be exempt from full IRB review is "the collection or study of existing data ... if these sources are publicly available."
hence... publicly viewable boards, i suppose...
'existing data'
hmm.
how about requesting people to 'give' data?
Posted by alexandra_k on December 28, 2005, at 18:46:15
In reply to Re: Hey » alexandra_k, posted by NikkiT2 on December 28, 2005, at 12:30:52
> I'm really confused as to why you think Dr Bob needs to get informed consent from people who will b e presenting, as themselves, at the conference.
i thought people were presenting as posters rather than as themselves.
> I regularly present at psychiatric conferences and have never, ever had to do anything like that before.. They're presenting the "user's" side of PB, not participating in research.
were you introduced by someone else (as part of their thing) or were you given your own slot?
do you think that makes a difference?
if someone else is introducing you as part of their thing... then wouldn't you think that person would have some kind of responsibility to check that you would be okay with that process etc. wouldn't you think that there might be some kind of process involved regarding informed consent etc?
Posted by pseudoname on December 28, 2005, at 18:57:58
In reply to Re: Babble's IRB history » pseudoname, posted by alexandra_k on December 28, 2005, at 18:43:25
Alex,
I think you & I are in complete agreement about the "informed" part. People should have lots of information.
But I don't follow your "consent" thinking. What sort of process of checking about consent are you thinking that Dr Bob should do?
> [...] wouldn't you think that person would have some kind of responsibility to check that you would be okay with that process etc
Posted by gardenergirl on December 28, 2005, at 18:58:47
In reply to Re: Hey » NikkiT2, posted by alexandra_k on December 28, 2005, at 18:46:15
> > if someone else is introducing you as part of their thing... then wouldn't you think that person would have some kind of responsibility to check that you would be okay with that process etc. wouldn't you think that there might be some kind of process involved regarding informed consent etc?
I've planned and given professional presentations in my field for a few years. Granted, I've never asked clients or "patients" to present with me, but as the chair of the program, I've not had to obtain informed consent of any kind to invite speakers to present with me.
A presentation at a professional conference presents data versus collects data. One does not need to give informed consent to present "data", in this case, personal experiences of posting on Babble. If Dr. Bob intends to use the experience of Babblers presenting as research, i.e. he collects data via observation, interviewing, etc., then those presenting with him would be considered research participants (formerly "subjects") and would have to give consent.
I've not heard from Dr. Bob whether he intends to collect any data regarding this experience. I would like to think he would announce that prior to anyone committing to go. Although that's just how I would do it--present the entire picture before asking anyone to join.
gg
Posted by alexandra_k on December 28, 2005, at 19:12:53
In reply to what do you mean by ''consent''? » alexandra_k, posted by pseudoname on December 28, 2005, at 18:57:58
> But I don't follow your "consent" thinking. What sort of process of checking about consent are you thinking that Dr Bob should do?
i'm not sure...
i'm not an ethics committee...
but i would have thought there would have been something (mostly so he could cover his butt in case things do go badly)also...
the welfare of the posters, of course...
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