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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 26 to 50 of 52. Go back in thread:
Posted by JohnX2 on November 1, 2001, at 0:17:22
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
I have a question for you. I suspect you may
be elusive. ;)
What is your take on the quality of information
posted on this board?-john
> Hi, everyone,
>
> Thanks for all your responses -- and positive feedback!
>
> But is everyone really so careful all the time? If so, are concerns about the quality of information online exaggerated? Do we not need to worry about unreliable information because it'll just be ignored?
>
> I realize another issue is that people here might not be a representative sample of all people online...
>
> Bob
Posted by Joey on November 1, 2001, at 1:55:16
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
> > Hello. I just joined this board, and I usually trust people whose semantic or language "cues" seem credible or authentic. For me, I usually trust those who are to-the-point, consistent in their thoughts, or who really resonate to what I wrote.
From an ethical point of view, I try very hard to use the pronoun "I" as much as possible to get accross that it's just my own, personal point of view. And in the world of psychiatric medication, I have never found this to me more true; namely, that everyone has different bodily reactions to medications, as well as ways of dealing with their own psychosis. I have personally found it helpful to be in this group because one, it's structured very well; two, I have found people who are going through the same things I am, even if they don't seem to know what to do--just the fact that they're out there helps; three, I have found it easy to trust some of the voices coming across on this board and was introduced to some ideas I hadn't even thought of.
I think that as long as people are aware of the risks encountered when non-professionals are expressing their opinions about serious matters, I think it's okay; however, I don't think it would hurt to also advise non-professional writers on boards like these that, due to the serious nature of these groups, that they respect the medical histories and complexities facing others.
Hope things go well in Washington. And thanks for creating this board. It personally helped me out.I'm supposed to say something [in Washington next week] about: (1) how aware patients in online support groups are of the various online ethics and quality initiatives, (2) to what extent those initiatives influence their use of online resources, (3) what other methods they use to decide whom to trust, and (4) the ethics of facilitating such groups.
> >
> > Any comments on any of the above? (Remember, these are comments I might present.)
>
> Or, looking at it another way, I'd be curious:
>
> 1. From the perspective of someone looking for information, how do you decide what information to trust? What leads you to trust a web site? Another group member?
>
> 2. From the perspective of someone providing information, do you just pass it on, or do you try to present it in a certain way?
>
> Thanks!
>
> Bob
Posted by Joey on November 1, 2001, at 2:32:39
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
> Dr. Bob: Yes, I think people's perceptions of what they find quality in does affect their own concerns, sometimes to their own detriment. More specific, it seems that the more quality a person perceives in something he or she reads, the less concerned he or she is about the veracity of what they read.
Humans are just faulty. We find credibility in things that might be obviously duplicitous to a bystander. Groups do come from all sorts of societies and personalities, but they're all operating under some kind of need, good or bad. If they don't fulfill their need there, they'll find another way to fulfill it. I can see group boards doing beneficial things for people as well as malign things. It all depends on the agenda of the person reading. Are chat boards, or people, responsible for the way someone perceives what they write? I don't think so. If that were the case, we'd all be in jail at some point in our lives!
>Hi, everyone,
>
> Thanks for all your responses -- and positive feedback!
>
> But is everyone really so careful all the time? If so, are concerns about the quality of information online exaggerated? Do we not need to worry about unreliable information because it'll just be ignored?
>
> I realize another issue is that people here might not be a representative sample of all people online...
>
> Bob
Posted by akc on November 1, 2001, at 6:23:40
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
>
> I realize another issue is that people here might not be a representative sample of all people online...
>
I think you may have hit a key point here. I do have a background that makes it hard for me to trust others. I cannot speak for others, though. All I know is that I am pretty careful with the information I get. Then again, I don't trust people easily -- here on the internet or in person. So I am going to check it out. It takes time in either realm for me to trust -- people have to prove themselves. The difference with people on-line is that it takes longer, I think. And depending on the information, I may always get a second opinion. So to answer your question -- yes, I'm pretty careful, most, if not all of the time.akc
Posted by Kaysey on November 1, 2001, at 6:41:36
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
> > I'm supposed to say something [in Washington next week] about: (1) how aware patients in online support groups are of the various online ethics and quality initiatives, (2) to what extent those initiatives influence their use of online resources, (3) what other methods they use to decide whom to trust, and (4) the ethics of facilitating such groups.
> >
> > Any comments on any of the above? (Remember, these are comments I might present.)
>
> Or, looking at it another way, I'd be curious:
>
> 1. From the perspective of someone looking for information, how do you decide what information to trust? What leads you to trust a web site? Another group member?
>
> 2. From the perspective of someone providing information, do you just pass it on, or do you try to present it in a certain way?
>
> Thanks!
>
> Bob1) I would never consider becoming a part of a web site group or any support group without researching information about the health problem that I was experiencing and/or medications that I was taking. With a baseline of knowledge, I seek personal experiences as well as additional information from web sites such as this one. Having some foundation of information allows me to sense what posts are trustworthy and/or valid.
There are a number of very articulate, well-versed individuals on this website who provide a great deal of useful, well-referenced and well-researched reports and data, in addition to realistic experiences. Though I would never replace a doctor-patient relationship with this, it certainly augments my treatment process and I value many of the posts.
2) I try to stress, probably redundantly, that any personal experiences that I share are JUST that: my own personal experiences. In addition to providing my scenarios, I generally give what is expected based on Rx information (i.e. known/expected side-effects, etc.)to compare/contrast with my own reactions.
In this process of 'comparing notes,' I don't think we are actually trying to mimic other people's treatment, I thinking that we are often trying to validate our own experiences which may be in conflict with what our physicians may be expecting. Though this is digressing some, I believe it is important to say that one of the biggest 'draws' of such a website is this validation of our reactions and progress, when the literature, and our physicians insist otherwise.
Posted by Kaysey on November 1, 2001, at 6:52:56
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
> Hi, everyone,
>
> Thanks for all your responses -- and positive feedback!
>
> But is everyone really so careful all the time? If so, are concerns about the quality of information online exaggerated? Do we not need to worry about unreliable information because it'll just be ignored?
>
> I realize another issue is that people here might not be a representative sample of all people online...
>
> BobCertainly the disclaimers that you (and other web sites) provide should be sufficient to advise the population that this is not a replacement for treatment nor a 'clearinghouse' of documented mental health information. However, realizing that there are some people who would disregard the disclaimers and inappropriately use the web site, I think it is important to supervise the site (which you do). Yes, it seems that those individuals who participate in psycho-babble are more informed and aware than the general public, but there may be more 'lurkers,' than we are aware of who could/would use the this inappropriately.
Posted by paxvox on November 1, 2001, at 7:48:12
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
Dr. B, IMHO, Those able to GET to PB or PSB are already a level or so above the "average" person treated for psyscho/social disorders. As such, I would think this forum would have to be looked at exclusively as a distinct and unique source of data, not applicable to the "world at large". Of course, that is your interest, I guess, to discern how the net works in therapy.
Careful? I doubt anybody runs out and pops the first pill that someone else suggests is just the ticket for them. I Do believe that many people are nascent in their knowledge level about treatment options. So many people have been conditioned to believe that Doctors are demigods, and their counsel never to be questioned. I have two family members who are physicians, they are no more intelligent than me, just more dedicated. I can glean relevant information from a variety of objective sources, and make my own educated conclusions on most medical issues. What I DO lack is clinical observation, and the requisite first-hand observation that I will never be able to attain. My point (yes, I was trying to make one) is that Docs are NOT perfect, are NOT the last word, and ARE human and as such are just as vulnerable to error as the rest of us.
What PB and PSB provide is a sounding board inabling us to find an objectivity ammended by ancedotal experiences of others. In this capacity, the board is extemely useful.
PAX
Posted by mair on November 1, 2001, at 8:15:39
In reply to Re: Is everyone really so careful all the time? » Dr. Bob, posted by Kaysey on November 1, 2001, at 6:52:56
> > I'm certain everyone is not careful or deliberative of how they use what they learn. I'm not sure how you account for that however. Medlib is correct in her statement that extended exposure to the board gives you a better sense of who knows what they're talking about. However, if your ability to understand the science of psychoparmacology is as limited as mine is, then the board is still very valuable but only for limited well defined purposes. e.g. the sharing of experiences, the gathering of enough information to help you formulate questions for your own physician etc. The person who hands out incorrect info and passes that off as fact is dangerous and I've seen lots of examples of where others try to bring those people to task. However, misinformation or incomplete information or misleading information is not going to always be picked up on and unless you want to become an information policemen, the best that you can do may be to make people understand the limitations of the board.
Mair
Posted by Mitch on November 1, 2001, at 9:36:23
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
> Hi, everyone,
>
> Thanks for all your responses -- and positive feedback!
>
> But is everyone really so careful all the time? If so, are concerns about the quality of information online exaggerated? Do we not need to worry about unreliable information because it'll just be ignored?
>
I think people *believe* the information they are offering to be relatively accurate(an "opinion" if you will). A doctor you visit personally is going to give an "opinion" based on the clinical evidence you present balanced against a set of statistical generalizations+clinical experience and propose a treatment. I don't think online information and support is the same as *treatment*. Given that it is not really "treatment", I think that there is a lot of unwarranted concern about online info being harmful in some way. I think people are going to be as "careful" as they can be most of the time. "Unreliable" information is also just that-information. I am not paying anyone to give me bad information.> I realize another issue is that people here might not be a representative sample of all people online...
>
> BobI wonder what the ratio of readers to posters actually is??
Posted by janejj on November 1, 2001, at 12:18:29
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
Hi,
i'd like to think that i'm totally objective about what i read, but i'm not !!
I only recently started taking effexor xr, the first anti depressant i have ever taken. I listened carefully to what my doctor had to say about the drug and left satisfied that although i might suffer a few side effects in the first week, eventually the positive benefits would far outweigh the negative and that this was one of the safest drugs i could take.
However upon taking my first 75mg, i felt pretty awful. Thats when i turned to the internet, trying to look for some 'support',hoping to find some success stories to help me through the tough days.
However all i seemed to be pulling up we're horror stories, it literally seemed as though i couldn't find anything positive about effexor and i admit i was petrified. If i had been reading about a drug i wasn't taking i'm sure that i would have been 99% objective, but effexor was in my system, this was different! I didn't really care about the source, everything seems valid when you're scared.My rational seemed to go out the window and my thinking was along the line,
'there's no smoke without fire'(sorry about the cliche !).I read so much about terrible withdrawal, that within a week i had made an appointment with my doctor and asked to be switched to prozac. He tried to persaude me otherwise and told me that all anti depressants had side effects, but i had read too much and would never feel at ease taking it, so eventually he wrote me a presciption for what i wanted. I only took effexor for 7 days, but the four days without were pretty terrible! As soon as i started taking prozac i started to feel better, i only seemed to have one side effect with this, racing thoughts.
This time around, i promised myself that i wouldn't look up prozac on the internet !Although i have to admit that i couldn't help it, although i tended to steer clear of websites like 'prozac survivors'. Dr Bob's site however seemed much more balanced and i was much more inclined to take peoples opinions and experiences as valid, although i'm always aware that not everything and everyone is for real !The fact that i feel fine on prozac also means i am much more likely to discard something negative that i read. People tend not to write about their positive experiences, but those who have had negative definately use the internet as a place to vent, rant and perhaps exaggerate their experiences. However its not just negative information that i'll discard, if something seems overly positive, I'm inclined to think its been endorsed by the company that made it or something !
I would never take actual pharmaceutical advice from someone one line, for example if someone told me it would be a good idea to increase my dose or to mix it with cough medicine. I leave that to my doctor.Reading about other peoples experiences are interesting though and help me to feel much less isolated in my battle against depression.
Hey, Dr. Bob, are we gonna be able to read ure article somewhere online ????
Hi, everyone,
>
> Thanks for all your responses -- and positive feedback!
>
> But is everyone really so careful all the time? If so, are concerns about the quality of information online exaggerated? Do we not need to worry about unreliable information because it'll just be ignored?
>
> I realize another issue is that people here might not be a representative sample of all people online...
>
> Bob
Posted by gilbert on November 1, 2001, at 18:18:40
In reply to Re: Is everyone really so careful all the time?, posted by janejj on November 1, 2001, at 12:18:29
Dr Bob,
The enviroment you have created here for a mental health forum is the best on the internet bar none. This site is successfull for a few reasons; First and foremost, superb monitoring, the site is policed enough to keep it focused and loose enough for views to be expressed openly. I think that has been created or evolved due to the simple fact we are forced to stay focused in our threads. We all know it...no nonsense, no personal attacks, no wacked out non substantiated ideas. This creates a forum with a purpose, to educate ourselves through our own experiences and the experiences of others who are on meds and their results. There is a variety of experiences for all different medications some good some bad but at least they are actual experiences, real world and not some drug companies list of adverse effects from some controlled group study bent to make their drug look good. Another very important point, I think all of us guinea pigs trust each other due to the fact we are in the trenches trying meds to get well. We know the pressure put on the medical establishment by the pharmaceuticals reps and we know where most drug companies put most of their resources into selling the drugs. We therefore are forced into a position of having only each other to truly hear the facts about whether or not these drugs work. Now don't get me wrong God Bless The drug companies and their ability to make me well but I still trust my mates who struggle as I do well beyond what My doc or the drug companies say. The truly great movements of self help...Recovery Inc, AA, NA, all the 12 step groups have depended on each other because it is much easier to trust someone who has walked the walk. Kudos to the way you direct the site and control its contents. I think what you have here is truly unique, very helpfull, and educational. Most doctors don't get data we see on this site. We are way ahead of the game. The last and very vital item....the members...there are members here like Cam, and Elizabeth, John L., Salarmy, ect....who go out of their way to answer questions for people to give then the ability to make good choices. Ultimately it's the participants which make the forum.....I agree this is not your typical internet site.....Thank God.
Keep up the good work
God Bless.
Gil
Posted by judy1 on November 1, 2001, at 19:06:26
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
I seem to remember a discussion a while ago where posters felt that we would self-police inaccurate info. I still believe that to be true. But I find I use this info as a starting point for a discussion with my pdoc, unless it's a subject that (unfortunately) I want to keep from him. Then I do the research on my own. Take care- judy
Posted by Shar on November 1, 2001, at 21:38:00
In reply to Re: Is everyone really so careful all the time?, posted by Dr. Bob on October 31, 2001, at 23:34:40
I am very careful...probably more now than a few years back. I take what I read on the internet with a grain of salt, unless I personally know the individual or group to be well-educated about the topic at hand. I still read from different sources, I don't only go to a few sites, but I use the trusted sites as confirmatory evidence.
Now that everyone and their dog can build a web site and put just about anything they want on it, quality seems more important than ever. I could have a web site saying (untruthfully) it is supported by Harvard Mental Health Group, and nobody would be too likely to come down on me about it, my being a tiny cog in a huge wheel.
And, when you consider that the population in general is trying to find information that is comprehensible (ie, lay language) some of the more trustworthy research/education sites may not have much appeal. So, constant monitoring does not seem to me to be too much.
One should also consider that the data on the internet, for even most trusted sites, still has random error based on the subjects in an experiment, or the researchers, or the typist, or ... etc. Thus, caveat emptor is very applicable.
Shar
> Hi, everyone,
>
> Thanks for all your responses -- and positive feedback!
>
> But is everyone really so careful all the time? If so, are concerns about the quality of information online exaggerated? Do we not need to worry about unreliable information because it'll just be ignored?
>
> I realize another issue is that people here might not be a representative sample of all people online...
>
> Bob
Posted by Gracie2 on November 2, 2001, at 13:35:28
In reply to Re: Is everyone really so careful all the time? » Dr. Bob, posted by Shar on November 1, 2001, at 21:38:00
Dr. Bob-
I don't think the people here are representative of everyone on line at all. I believe "chatrooms" are fairly representative and I think they're repulsive. Reading the above (very long) thread, I think one is struck by the intelligence of the posters. Prehaps this is because, with our emotional problems and our deep wish to be well -
not even "normal" or "happy" but just well - we are more introspective and prehaps more informed from our regular reading and research and our constant trading of information.While there is the occasional need to ban a rude poster or call for an apology, this seems to be minimal when you consider the amount of members involved. I think we are a civilized group, particularly when you take into account that some posters have problems with anger and substance abuse. Normally the other members are very supportive.
I think you're doing a wonderful job.
-Gracie
Posted by Cindylou on November 2, 2001, at 20:19:14
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
Hi Dr. Bob...
> 1. From the perspective of someone looking for information, how do you decide what information to trust? What leads you to trust a web site? Another group member?Like others have mentioned, I do learn to trust certain posters here just by spending time on the board and getting to know the different personalities of the posters. I tend to "trust" people's experiences rather than studies that people copy and paste into their messages.
But I always use the information here as something to pass along to my pdoc. I have faxed her several posts, and discussed several options with her that I have learned about on this board. I also research meds on the web that I have initially learned about on this board.
> 2. From the perspective of someone providing information, do you just pass it on, or do you try to present it in a certain way?When I provide information, i usually share my experiences with certain meds to the people who are asking for input. I also share things that my pdoc discussed with me regarding certain medications.
Good luck with your presentation!! You have created something wonderful here. You do an excellent job of maintaining and monitoring this site -- I am constantly amazed. Thanks.
cindy
>
Posted by Jane D on November 2, 2001, at 21:27:07
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
I have varying levels of trust. I don't trust any of the information on this site enough to go out and take the drugs described without more information. I do trust some of the posters enough to spend the time checking out links that they provide or searching out my own information on ideas that they suggest. I also use some of the explanatory posts to help understand complicated information from those other sources much like using an instructor to explain a text. Whether or not I trust the posters this much mostly depends on their track record but also by whether what they say is consistent with what I already know. The stability of the posters is useful here since it makes it possible to form impressions of peoples accuracy over time.
One reason I don't trust the posts further is anonymity. There is no way of knowing that people are who they claim to be or that, when 2 or more posters agree, they are really 2 different people. Again, stability helps here somewhat. Another problem is the limits of personal experience. I can't even reliably determine cause and effect in my own case so I know that others can be mistaken as well.
I do use personal accounts in another way - to clarify my own feelings. These are the posts that I read and say "Yes! That's it. That's what was bothering me that I couldn't find the words for". Here there is no such thing as mistaken and even if the other poster was lying, in the most extreme example, it wouldn't matter.
In trusting other sites I use the same criteria as for other pre internet sources: who the author is, what if any credentials they have, what if any known or suspected biases they have (ie drug company, DEA, Amer Psychological Assoc), any constraints they have on what information they present (fears of liability), how reasonable the assertions are, and who else vouches for the information (provided the who else meets all of the other criteria).
In short I guess I really don't trust anyone absolutely at all.
If I present information I try to give the sources I am using so that people can make up their own minds. I don't think anyone should trust me either. Unfortunately, doing that would often take more time than I have to give so I end up not posting at all.
Jane
Posted by jojo on November 3, 2001, at 10:48:43
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
I always check out scientific references.
Regarding passing on information, I give my own
personal experience and/or provide references.
Posted by Katey on November 3, 2001, at 14:48:26
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
I'm fairly new here, but i already know who is pretty well respected by the fact that you find questions specifically directed towards them. i use PB for a couple of reasons. this is one of the best read and most knowledgable groups i've found...anywhere. it also gives me options to bring up with my gp or my pdoc, that i would not othewise have known about. at the same time, it assures me that im not completely abnormal and the only one to have ever had my problems or side affects, which is extremely comforting in itself. people are also kind and compassionate, which isnt always easy to find in the real world, especially since people on here know what your going through and can actually relate. But those are just my thoughts, good luck with your speech.
Posted by Dr. Bob on November 8, 2001, at 8:44:08
In reply to Re: How do you decide what to trust?, posted by Katey on November 3, 2001, at 14:48:26
> I'm fairly new here, but i already know who is pretty well respected by the fact that you find questions specifically directed towards them...
Thanks, everyone! People at the meeting felt your comments could be a *guide* to how to approach information on the Internet :-) so I've selected some for the FAQ:
http://www.dr-bob.org/babble/faq.html#trust
Bob
Posted by Shawn. T. on July 14, 2002, at 3:29:35
In reply to Re: How do you decide what to trust?, posted by Mitchell on October 31, 2001, at 7:22:53
Posted by Shawn. T. on July 14, 2002, at 3:31:47
In reply to Re: How do you decide what to trust? » Dr. Bob, posted by Kaysey on November 1, 2001, at 6:41:36
You are a much wiser man than I, Dr. Bob.
Posted by Shawn. T. on July 14, 2002, at 3:32:29
In reply to Re: How do you decide what to trust?, posted by Shawn. T. on July 14, 2002, at 3:31:47
I meant to say "than me."
:)
Posted by Shawn. T. on July 14, 2002, at 3:38:08
In reply to How do you decide what to trust?, posted by Dr. Bob on October 30, 2001, at 1:56:11
Please tell them my name in Washington, Dr. Bob! This is the greatest country in the world, and I would like to help influence drug laws someday.
Shawn M. Thomas
Posted by Shawn. T. on July 14, 2002, at 3:41:10
In reply to Re: How do you decide what to trust?, posted by Twain on October 30, 2001, at 7:35:40
I would feel uncomfortable with the people on this forum if they were unable to think for themselves. A critical eye is a beautiful thing to possess.
Shawn
Posted by Shawn. T. on July 14, 2002, at 3:49:02
In reply to Re: How do you decide what to trust?, posted by Twain on October 30, 2001, at 7:35:40
Your insights have blown my mind. I will be forever grateful to all of you. Your understanding of the scientific method has allowed you to assist in breaking new ground. I'm not the smartest person in the world, but I can teach the people who are a thing or two.
Sincerely,
Shawn M. Thomas
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Dr. Bob is Robert Hsiung, MD,
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Script revised: February 4, 2008
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