![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 59 to 83 of 86. Go back in thread:
Posted by alexandra_k on December 28, 2005, at 21:40:53
In reply to Re: consent procedures » alexandra_k, posted by pseudoname on December 28, 2005, at 20:35:48
> Oh. Then... is your informed-consent concern (in part) about how consumer sites will end up looking to the assembled pdocs?
No. My concern is how the posters are going to feel during and after being questioned by the assembled p-docs.
And I'm not talking about anxiety...
Or... Maybe p-docs (as a group) are more interested in and respectful of consumers experience than my experience leads me to believe.
I wouldn't have thought they would be terribly interested in a particular posters experience...
I would have though they would be more interested in trying to establish quality of info etc which involves them interpreting the significance of a persons report of their experience.
So there is a distinction between reported experience and veridicality of that / significance of that. And where there is a distinction... The experience can be very invalidating indeed... Especially when it is the first time that people have met. I mean... How many first meetings with p-docs tend to go well? How much do they tend to care about your experience? How much do they tend to undermine your experience because they are thinking more to establish some point or other (mostly to themselves)?
And they aren't going to be in 'I am a p-doc and you are a client' mode. They are going to be in conference mode. But maybe philosophy conferences tend to be more confrontational / argumentative / borderline hostile than psychiatry conferences?
Does this make any sense?
Of course I have no idea really how it will go and I suppose there is only one way to find out.
But I think people should think about it...
And I also think Dr Bob should obtain informed consent. Because... If it does go badly for someone or more than one someone...
Well. It is wise to cover ones *ss.
Posted by alexandra_k on December 28, 2005, at 21:45:23
In reply to Re: consent procedures » alexandra_k, posted by Tamar on December 28, 2005, at 20:50:44
Tamar...
I appreciate the thought.
Consider this.
260 applications for 15 places.
That isn't unusual.
Any applicant in the top 100 could do really very well.
A typo is enough to rule you out.
And thats grad school.
When it comes to employment...
Over half the people who come out with PhD's never work in the field.
There you could be looking at 200 or more applicants for one place.
And thats to work at the university of where?
A history of mental instability...
I'm not a f*cking genius.
I can do it.
Me and thousands besides.
People find out...
Game over.
Posted by pseudoname on December 28, 2005, at 23:15:10
In reply to Re: consent procedures » pseudoname, posted by alexandra_k on December 28, 2005, at 21:40:53
Ahh, yes. Now it's clear. Pdocs in "conference mode"! Love it. This explication I understand. People should think about it. It should somehow be part of the caveat discussion or lists or whatever.
I have seen psychologists in conference mode figuratively rip to shreds a grad student who gave a presentation challenging some basic ideas in a certain sub-field. It was fun to watch, since I didn't like the guy. (Yes, I had an evil streak once.)
> I have no idea really how it will go
Me neither. It will be interesting.
But maybe these docs, although in conference mode, will be *very* aware that we are fragile consumers. Dr Bob will be there, hovering around the groups, and he'll give an introduction in which (I hope) he reminds them not to bite. I actually think they may even be grateful we are there.
But as you say, there is only one way to find out.
> And I also think Dr Bob should obtain informed consent.
We come full circle back to this. What is the "informed consent" Bob should obtain. (That's posed rhetorically.) Alex, I know that you've said you don't really know what it would be, but we'd be putting a rather unfair burden on Dr Bob, if we were repeatedly telling him he should obtain something we can't define.....
Posted by Deneb on December 29, 2005, at 0:05:02
In reply to Re: conference mode » alexandra_k, posted by pseudoname on December 28, 2005, at 23:15:10
> I have seen psychologists in conference mode figuratively rip to shreds a grad student who gave a presentation challenging some basic ideas in a certain sub-field. It was fun to watch, since I didn't like the guy. (Yes, I had an evil streak once.)
OMGosh, that sounds terrifying. I'm not an expert. I hope people won't ask tough questions. I'm just a lowly undergrad who doesn't know much at all about psychology/psychiatry/conferences/interacting in the real world. LOL!
> > I have no idea really how it will go
>
> Me neither. It will be interesting.I fear I'm going to make such a huge fool of myself that I'll have to ____ myself afterwards! Aaaah!
Maybe one of the consent questions should be: "Do you understand that you might be so embarrassed that you would rather die?"
To which I'll reply: "Yes, I'll risk my life to see Dr. Bob."
OK, I seriously hope I'm just thinking of the absolute worse right now!
Deneb
Posted by Deneb on December 29, 2005, at 0:12:23
In reply to Re: conference mode, posted by Deneb on December 29, 2005, at 0:05:02
Just to let you know, I wasn't joking about death.
I was civil cuz I was sort of serious.
Deneb
Posted by alexandra_k on December 29, 2005, at 0:21:07
In reply to Re: conference mode » alexandra_k, posted by pseudoname on December 28, 2005, at 23:15:10
> I have seen psychologists in conference mode figuratively rip to shreds a grad student who gave a presentation challenging some basic ideas in a certain sub-field. It was fun to watch, since I didn't like the guy. (Yes, I had an evil streak once.)
Yes. That was what I was thinking of. That happens a lot in philosophy too. In fact... That should be the aim. Anything left standing at the end of the day is considered 'not bad' ;-)
Seriously though I don't imagine it would be all THAT bad. Firstly, Dr Bob has talked about Babble before so I imagine he has had a chance to warm people to the notion of self help internet boards. And I'm guessing he won't be saying much of anything he hasn't said before, so I'm guessing people won't object anymore than they have previously...
If you undermine the basic assumptions of a field you can expect to be met with serious opposition. Because a lot rests on basic assumptions and if you advocate changing them then the ramifications of that... That is why it is wise to subject that to serious critique.
But I'm thinking this won't really be about that...
> But maybe these docs, although in conference mode, will be *very* aware that we are fragile consumers.Yeeeeeeeeeeeeeeeeeeeeees. Maybe my experience is out but my experience is that p-docs aren't generally all that concerned... Maybe mine were just overworked or whatever?
> > And I also think Dr Bob should obtain informed consent.
> We come full circle back to this. What is the "informed consent" Bob should obtain. (That's posed rhetorically.) Alex, I know that you've said you don't really know what it would be, but we'd be putting a rather unfair burden on Dr Bob, if we were repeatedly telling him he should obtain something we can't define.....I think Dr Bob should get ethical approval for this one...
Posted by alexandra_k on December 29, 2005, at 0:30:20
In reply to Re: conference mode » pseudoname, posted by alexandra_k on December 29, 2005, at 0:21:07
and...
while this is probably something of a seperate issue...
i'm wondering about the 'informed consent' process regarding posting to this site...
i'm thinking that some things...
well...
some things it is considered unethical to ask people to do - whether they give informed consent or not.it is unethical for a therapist to sleep with a client - and no informed consent from the client makes that an appropriate request.
yeah, extreme example...
but i'm thinking about informed consent to having your posts archived indefinately... at the same time as fostering a 'supportive' environment which of course encourages people to spill...
is it ethical to do that with full knowledge of the possible harm that could result?
yeah, the informed consent is supposed to establish that the poster understands the possible harm...
but understanding...
and fully comprehending can be two very different things.
documented in the archives indefinately...for all the world to see...
how would you feel if your therapy transcripts were publicly accessible?
of course...
this isn't an issue for most.
just a few
just a fewand the possible harm to a few
well...
nothing compared to the good of the group
after all...
using publicly viewable info isn't research.
hmm.
and the boards get bigger...
but every now and then there seems to be a voice...
Posted by alexandra_k on December 29, 2005, at 0:44:41
In reply to Re: conference mode, posted by alexandra_k on December 29, 2005, at 0:30:20
just like we give dr bob permission to use our posts as he wishes in the informed consent when we join up...
just because we have given him permission...
doesn't mean that unethical uses aren't possible.
he couldn't expect to write something that was belittling and demeaning and the poster to say 'oh well of course i gave you permission to do what you wished with it'
or
he couldn't expect to email it to your employer and have you say 'oh well of course i gave you permission to do what you wished with it'
so giving permission for him to do what he wishes...
what sense?
why doesn't he have to ask permission...
like everybody else (should)...i don't understand.
of course...
i do trust that he is well intentioned.
i do.but the possible ramifications...
didn't matter to me when i thought my life was over anyway...
starts to matter as you get better i think.
though of course i'm not better.
and i'd likely be dead if this place hadn't been here...
but that doesn't mean...
he is free to run the boards how he wishes.
i mean...
seems that he is just about.
but ethically...
doesn't mean he is free to run the boards how he wishes...
i don't think.
Posted by Dr. Bob on December 29, 2005, at 1:00:20
In reply to Re: consent procedures » pseudoname, posted by alexandra_k on December 28, 2005, at 21:40:53
> who decides this isn't research?
Only the IRB may determine whether research qualifies as exempt. I suppose it wouldn't hurt to ask? Would you like to argue that it should be considered research? I could include a statement from you...
> when dr-bob gave a seminar a while back he asked people to post (offer data) about their experiences and there people were required to give informed consent before hand.
That was for a publication, not a seminar...
> my understanding... is that there are ethical committees and safegards in order to protect people from some nasty things that can happen that they may not fully appreciate if left to their own devices.
> I wouldn't have thought they would be terribly interested in a particular posters experience...
>
> I mean... How many first meetings with p-docs tend to go well? How much do they tend to care about your experience? How much do they tend to undermine your experience because they are thinking more to establish some point or other (mostly to themselves)?So you're concerned that nasty things might happen to the posters? Because the psychiatrists might not care about them? And you want them to be protected?
> If it does go badly for someone or more than one someone...
>
> Well. It is wise to cover ones *ss.And you're concerned about me and want me to be protected, too?
Bob
Posted by Dr. Bob on December 29, 2005, at 1:00:31
In reply to Toronto and ''research'', posted by pseudoname on December 28, 2005, at 13:02:59
> 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.There's already been a lot of discussion, but I agree, there could be advantages to a list of potential risks, benefits, and alternatives. Would anyone like to add anything else?
Bob
Posted by Deneb on December 29, 2005, at 1:46:44
In reply to Re: nasty things, posted by Dr. Bob on December 29, 2005, at 1:00:20
> > I wouldn't have thought they would be terribly interested in a particular posters experience...
> >
> > I mean... How many first meetings with p-docs tend to go well? How much do they tend to care about your experience? How much do they tend to undermine your experience because they are thinking more to establish some point or other (mostly to themselves)?
>
> So you're concerned that nasty things might happen to the posters? Because the psychiatrists might not care about them? And you want them to be protected?
>
> > If it does go badly for someone or more than one someone...
> >
> > Well. It is wise to cover ones *ss.Hey Dr. Bob, only *you* know how these APA seminars go. You've been to a few haven't you? You probably have some idea of how the pdocs there treat people. Can you tell us whether or not it is likely that they will start attacking us and making us feel bad? Do you think they will be confrontational and not care?
I was going under the assumption that the pdocs there will be like normal regular people. Normal regular people are generally kind and accepting. Am I wrong to assume this?
Deneb
Posted by alexandra_k on December 29, 2005, at 2:00:17
In reply to Re: nasty things, posted by Dr. Bob on December 29, 2005, at 1:00:20
> That was for a publication, not a seminar...
ah. the only feedback we got was this:
http://www.dr-bob.org/babble/admin/20041109/msgs/429275.html
i figured that was a seminar...
and we didn't get feedback about it having been used for anything else...(i guess i was assuming we would be informed about the particulars if it was accepted for publication but maybe i was wrong to assume that?)
> So you're concerned that nasty things might happen to the posters? Because the psychiatrists might not care about them? And you want them to be protected?
i am concerned that the psychiatrists might be most interested in obtaining information. and we see on the boards what can happen when one person is focused on education and another is focused on their experience...
> And you're concerned about me and want me to be protected, too?sure.
because people do post things...
and i'm thinking back to some of the things i've seen posted here over the years...
and there was one thing i'm remembering that was about the 'ethics' of such a site...
and i'm starting to see...
that (IMO) there may well be some legitimate concerns.
i'm really not meaning to question your intentions...
but (IMO) there may well be some legitimate concerns.
and...
i don't know whether this is all talk or what...
but there was something about a certain moderator being sued...
and regardless of whether there was some truth to that or not...i think it is wise to cover ones *ss...
because if you play with fire...
well...
yeah. pays to be careful to do things by the book...
Posted by thuso on December 29, 2005, at 2:01:39
In reply to Re: conference mode » alexandra_k, posted by pseudoname on December 28, 2005, at 23:15:10
After reading all the issues people are bringing up about what might happen at the conference, I'm starting to get excited about it. haha! While some people seem to be getting worried...I'm getting more and more pumped about people here doing this. :-) I'm about at the point where I want to go! haha! I love a good challenge. :-P
All I know is that whoever participates in this will do a great job and hopefully help the pdocs understand how helpful these types of sites are for so many of their patients. If these pdocs are going to be rough on anyone it will be Dr. Bob...not any babblers.
And with this list it might be a good idea to associate with each item the risk involved. For example...a disgruntled ex-babbler coming to disrupt the event - Very Low Risk. Or...running into an old pdoc or someone that could recognize you - Low Risk. Not everything on the list will carry the same risk, so I think it is a good idea to let the participants know that even though it is a possibility...the chances of it happening are very low. It might alleviate any fears associated with that item.
Posted by alexandra_k on December 29, 2005, at 2:09:13
In reply to Re: We can put together a list, posted by Dr. Bob on December 29, 2005, at 1:00:31
- what sorts of questions do you usually get asked (e.g., after the seminar i posted a link to?)
- did people say they would like to talk to posters about their experience or did you think they might like to do this?
- if posters knew more about what you and kali were going to be saying in the intro and lead in to their bit... then they might have a better idea of the kinds of questions they are likely to get (people tend to ask questions related to things they just heard).
Posted by thuso on December 29, 2005, at 2:11:23
In reply to Re: nasty things, posted by Deneb on December 29, 2005, at 1:46:44
> Hey Dr. Bob, only *you* know how these APA seminars go. You've been to a few haven't you? You probably have some idea of how the pdocs there treat people. Can you tell us whether or not it is likely that they will start attacking us and making us feel bad? Do you think they will be confrontational and not care?
>
> I was going under the assumption that the pdocs there will be like normal regular people. Normal regular people are generally kind and accepting. Am I wrong to assume this?
>
> DenebIt isn't likely that you will be attacked in any way. If any pdoc is going to bring up any objections, it will be directed towards Dr. Bob. You will act more like a living presentation at the meeting. Instead of using a powerpoint the entire time to lecture the pdocs on the subject, you will be used as the teaching tool. The pdocs will be there to learn and listen to you, not attack you. I can't gaurantee that you won't get a question or two that might be uncomfortable for you to answer, but you can always just let them know you don't want to answer. I HIGHLY doubt anyone will pressure or confront you.
Posted by alexandra_k on December 29, 2005, at 2:12:17
In reply to Re: » Dr. Bob, posted by alexandra_k on December 29, 2005, at 2:09:13
has it been done before?
a group of consumers being part of an APA seminar?
if not...
there probably aren't any guidelines.
but you have told them that is happening - right?
and they didn't say anything about ethical approval?
do you have to sign something somewhere along the way?
i'm thinking...
i've seen forms...
'did any human or animal subjects participate...'
'was this approved by the relevant ethics committee?'you don't have to do this for APA seminars?
Posted by alexandra_k on December 29, 2005, at 2:26:23
In reply to Re: nasty things, posted by Dr. Bob on December 29, 2005, at 1:00:20
> Only the IRB may determine whether research qualifies as exempt.
whether research qualifies as being exempt from having to obtain informed consent do they mean?
> I suppose it wouldn't hurt to ask?
IMO it is likely to hurt more (in the long run) NOT to ask and find the way they see it is different from the way you see it...
>Would you like to argue that it should be considered research?
not particularly.
so long as they get a chance to make a determination one way or the other.
that way...
you are less likely to get into trouble later...
also.
i suppose there may be a slight chance that they say 'nope' you can't do it for some reason or another (that might not have occured to us...)
good to let them do what only they are supposed to do...
Posted by gardenergirl on December 29, 2005, at 8:27:15
In reply to Re: conference mode » pseudoname, posted by alexandra_k on December 29, 2005, at 0:21:07
> I think Dr Bob should get ethical approval for this one...
What institution should give this approval? The mere fact that the proposal for the presentation was accepted by ApA provides some level of ethical approval, because members must follow the ethics code in all professional activities.
Regarding attendees challenging the data presented, well, I believe any challenge would be directed at Dr. Bob or Kali. The posters who are presenting their personal experiences, perhaps related to medication posts, but who knows...well, you can't really challenge a personal experience. It might be discounted, but I don't think Babblers would be "ripped to shreds."
A perfectly valid and acceptable answer to a question one doesn't know about or has no experience with is, "I don't know." or "I have no experience with that med, issue, concept, etc." The Babblers are only experts on their own participation in Babble. Nothing more, imo.
And about posts being archived indefinitely and potential harm from that...well...that's really a separate issue from this project, I think.
gg
Posted by gardenergirl on December 29, 2005, at 8:33:22
In reply to Re: conference mode » alexandra_k, posted by gardenergirl on December 29, 2005, at 8:27:15
I see that others made the same points as I did. Should have kept reading before responding...
:)
gg
Posted by pseudoname on December 29, 2005, at 9:03:57
In reply to Re: conference mode » alexandra_k, posted by gardenergirl on December 29, 2005, at 8:27:15
It's too bad we're only online. It would be nice to have a practice session beforehand.
I used to participate in a gay panel program, where 4-6 of us would be invited to go to a meeting of social workers or a college class or whatever, and we'd just answer questions about what it was like to be gay. (This was in the Dark Ages, before "Ellen".)
We had practice sessions where we'd all ask the newbies the WORST questions we'd ever gotten. We'd play the role of obnoxious bigots in the audience, really put 'em through the wringer.
After that, the real sessions were a piece of cake.
We could come up with a list of responses to tough situations, starting with gg's "I don't know." Another one I like is, "I don't know what to say."
> I see that others made the same points as I did.
I disagree, gg. Your points were original.
Posted by NikkiT2 on December 29, 2005, at 13:33:03
In reply to Re: Hey » NikkiT2, posted by alexandra_k on December 28, 2005, at 18:46:15
I don 't relaly have the energy to argue this Alex.. sorry.
But, even if they post as posters, they are still speaking of their *own* experiences. When I present, I am presenting as a patient, but I am also myself, talking of my own and my peers experiences.
Yes, information is empowering. Knowing your audience, knowing who will be there, and what else is happening is important.
I've been doing this for a number of years now, and at the beginning I would present and go home.. through work I (and others) have done with numerous bodies here, they now recognise that support afterwards is needed.. professional support to deal with any issues that have arisen from it.
Maybe I am completely misunderstanding what you mean by informed consent. To me that means formally signing a document and it going via an ethics committee.
People who use mental health services, and boards like this, going out there and telling people of their experiences is vitally important in my book, and you can believe me that if I had the money and time I would be there also. (And you don't know how close I am to it, as my best friend lives near Toronto and I would give SO much to see her!). We need to break down the boundries, and fight the stigma.. and standing up and doing it in front of others is the best way to achieve it.
Nikki x
Posted by alexandra_k on December 29, 2005, at 17:30:37
In reply to Re: Hey » alexandra_k, posted by NikkiT2 on December 29, 2005, at 13:33:03
> I've been doing this for a number of years now, and at the beginning I would present and go home.. through work I (and others) have done with numerous bodies here, they now recognise that support afterwards is needed.. professional support to deal with any issues that have arisen from it.
right.
that sounds like a good thing.> Maybe I am completely misunderstanding what you mean by informed consent. To me that means formally signing a document and it going via an ethics committee.
yeah. getting ethical approval for babblers participation in the seminar. you see... an ethics committee could put a number of restrictions on how that is done in order to look out for the posters welfare.
so... that there has to be some kind of debriefing afterwards, for example.
see what they say.
thats all i'm saying.
i think it should go before them for approval BEFORE rather than... things maybe going badly and there being trouble after the event...
Posted by alexandra_k on December 29, 2005, at 17:38:17
In reply to Re: conference mode » alexandra_k, posted by gardenergirl on December 29, 2005, at 8:27:15
> because members must follow the ethics code in all professional activities.
ah. and is there a code regarding patient participation in activities such as seminars?
> Regarding attendees challenging the data presented, well, I believe any challenge would be directed at Dr. Bob or Kali.sure.
> you can't really challenge a personal experience.
well... someone could say 'yeah i get a lot of helpful info off the med board' and then proceed to talk about some of the 'helpful' suggestions. and they might be sitting there thinking 'but actually that is a very dangerous suggestion because obviously the person making the suggestion didn't know about this possible side effect'.
so... the posters experience is that 'there is accurate information on the meds board' but the p-docs can assess that one by listening to some of the concrete suggestions that people have made.
and the person doesn't appreciate the significance of what they are saying...
or someone talking about helpful support on the psychology board... and them listening to examples... and thinking 'well thats probably just completely undermined what the therapist was probably trying to do with that person'.
in those kinds of cases... experience says one thing... and the 'concrete' bits... say otherwise. in which case... can you imagine that the tone might get a little sceptical / patronising / etc.
make any sense?
it is possible...
> It might be discounted, but I don't think Babblers would be "ripped to shreds."
no i don't think they would be ripped to shreds either. but if it is discounted... that can be painful enough... especially if one doesn't understand what went wrong...
> And about posts being archived indefinitely and potential harm from that...well...that's really a separate issue from this project, I think.yeah it is.
but it is ethics... once more.
Posted by pseudoname on December 29, 2005, at 18:01:31
In reply to Re: Hey » alexandra_k, posted by NikkiT2 on December 29, 2005, at 13:33:03
> they now recognise that support afterwards is needed.. professional support to deal with any issues that have arisen from it.
Great idea!
A debriefing session just for the presenters, with Bob, right after the workshop would be excellent. (And I don't think the Babble birthday get-together is a debriefing session...)
Posted by Dinah on December 29, 2005, at 19:15:25
In reply to debriefing, posted by pseudoname on December 29, 2005, at 18:01:31
With Dr. Bob?
I can see it now. :)
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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
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