[Yady Smith]

I'm the type of guy who tends to do a lot of thinking. It occurred to me last night that this website would make an invaluable resource for students and practitioners in the mental health system.

It just makes sense, here is a space where people can open up anonymously about their conditions without the fear of ridicule from friends or peers. To have access to all of these ongoing conditions, from so many people and in the one place, must be an invaluable resource indeed.

Don't get me wrong, this isn’t a criticism or complaint of any description. I suppose you could call it an ‘observation’. Students have to learn, and researchers have to research. If I can help to teach someone, who can then help someone, then I’m all for it.

However, I would ask that if ‘anyone’ wants to ask me a question please don’t ‘pretend’ to be someone you’re not, be it in a reply to a post or in a chat room.
Anyone is more than welcome to email or pm me and ask me “any question you want”. I’ll be more than happy to give you an honest answer.

I’m writing this now as I know it will be monitored by a human before being posted. I’m curious as to what the website‘s policy will be on this post.

[DocJohn]

Formal research by any student or researcher has been banned from our community since Day 1. This is because I saw another community used for research -- without their awareness or permission -- by a professional who didn't even bother to get IRB approval for his study (which was published anyway). So I am fiercely protective of the community from that perspective.

Does that stop student therapists or others from coming on here to learn about how people might use a self-help support group to help themselves? No, of course not. But it does prevent the community from being used as guinea pigs in an experiment.

I would also say this, though... when I was in grad school, there weren't any courses on learning about self-help or peer-driven resources (online or offline). Such courses are a rarity still today.

While you may see so many people and so many threads as a "invaluable resource," most students would probably see it as a bit overwhelming. Grad school is a busy time, and there's not a lot of time to read thousands of posts by hundreds of people...

Of course, anytime you post anything anywhere on the Internet, you open yourself up to observation (and possible scrutiny) by anonymous others. That's the price we pay for such resources.

Just some thoughts on the matter...

DocJohn

[Yady Smith]

Many thanks for that most informative reply. What you said makes perfect sense, and to tell you the truth it also makes me less apprehensive about posting in general.

Thank You.

[amandalouise]

I agree great post and very informative DocJohn.

Originally Posted by DocJohn

Of course, anytime you post anything anywhere on the Internet, you open yourself up to observation (and possible scrutiny) by anonymous others. That's the price we pay for such resources.

fantastic point!

something I recently accidentally came upon.. my co worker was invited to speak in the college psych class last march.. what ever he said it hit home for one person in the class. She came in to the crisis center about a week after "Hank" spoke before the class. We helped her successfully prosecute someone that was using frat parties and GHB for his own private party activity. this client came in to a session in September. She shared her psych class itinerary and told me she had a great idea for her first of 4 papers, and had already started it. She showed me what she had... imagine my surprise when I saw her paper was on what happened to her, how it affected her mentally and how she was using the vast community resources. She was also including statistics and online resources with some quotes from a variety of online groups she had found. the kept the paper in check by not disclosing the user names. I happened to recognize one of the quotes to be something another one of my clients always says.. kind of like here we have signatures at the bottom of our posts.. well some of my clients that I have been seeing for a while now has a habit or signature to using this statement. I could not disclose to the writer of this paper who was also my client I recognized the statement and who it belongs to. I did the next best thing. I asked her how she would feel if without her knowledge someone from our 3pm group decided to tell about herself and use something she had said in the 3pm group for her class assignment. and what if the instructor of the class recognized that quote to be hers. She turned white. no one at the college knows she was victim number what ever in the GHB case and was the brave soul that first came forwards. I then I pointed to the quote that happened to be mine from another website, and gave her the option of keeping that quote and officially interviewing me and I would be glad to a part of her classwork. I told her I would also be glad to talk to my other clients and let them know one of my clients needs quotes and possible interview with survivors. She gave me permission to give out her name and number. A week later she came in with a new rough draft. and a surprise... three of the quotes she had found online were those of three college students two of which happened to be in her psych class. If she had read that first rough draft she could have totally embarrassed her two classmates. I then told her though it is surprising when she does papers like this to first look around her class and apply the statistics.. with her class of 28 students she ran the possibility of accidentally disclosing / harming at the least 9 possible victims.

my point being like you stated DocJohn you are doing everything you can to prevent us from being experimented on. but you cant stop everyone. every time we post anywhere we are leaving our selves open for observation,and use by others.

thanks for the reminder.

[lizardlady]

Doc John,thank you for not allowing us to be used as guinea pigs.

How could that person do research and publish the results withouth an IRB?

[Open Eyes]

Well, as far as I am concerned if anyone happens to learn anything here that can some day help many, if anything I have said or conveyed is used to help anyone, I am totally fine with that. The thought of being observed did cross my mind and I did think about it and made the decision above, I know I am struggling and have been learning a lot and I do my best to support others.

I am glad to hear that this site is protected from known individuals that want to study the different input from various people that struggle. But as you say, who knows what person may be simply pretending. That can happen anywhere, so we all take our chances whenever we are living life right? Personally the good outweighs the bad I feel for members here. I have met some very nice supportive people on this site, people to whom I am very grateful, that have helped me learn and have supported me in my efforts to learn about my own issue. And I have to say I have learned more than I thought I would learn. I look at people differently now, people struggle more than we realize.

Thank you for this wonderful site

Open Eyes

[specialeffects]

Happy Chappy ,
Very valid question for resource as the most D I D people that can find help and support. Also those that have Therapist issuses and relationship forums are abundant with Q&A to the point of where to go from here.
.
I only stressed the D I D forum for I read there often and have doubts ,, not to the condition , but other things. Sometimes I look at other posts here and find substance abuse , alcohol , family , and relationships . Along with therapists meaning well but often at odds with credibility.
.

While you may see so many people and so many threads as a "invaluable resource," most students would probably see it as a bit overwhelming. Grad school is a busy time, and there's not a lot of time to read thousands of posts by hundreds of people...

Of course, anytime you post anything anywhere on the Internet, you open yourself up to observation (and possible scrutiny) by anonymous others. That's the price we pay for such resources.

Just some thoughts on the matter...

DocJohn

.
But I have to agree with what Doc John states; many threads as an " invaluable resource".
Se
specialeffects.
:-)

[elliemay]

Not to defend others, but some research can be considered exempt from IRB approval and informed consent if it is considered "observational and non-invasive" like simply watching people in a shopping mall.

In cases like this obtaining informed consent is not necessary, BUT it was my understanding the these studies still have to considered by an IRB and declared exempt.

[DocJohn]

You're right, elliemay, but only the IRB can make that determination (which was not done in this case). I also have my doubts that research into a peer-led, self-help support group would be exempt from most IRBs, if for no other reason than privacy concerns about the individuals posting (who may be identifiable by their posts or username if not informed previously such things may appear in print).

DocJohn

[elliemay]

You know, and I guess I'm just wondering out loud here, but one does have to question the culpability of the publishing journal in these cases.

[Caretaker Leo]

I appreciate what DocJohn and the other team members are doing to try to prevent this from happening.

With a community this large, there are no guarantees that this situation won't happen.

IMHO, I have come across a few members here who seem to be collecting data. Some clues to me are how many posts they make in one day, what their personal profile says about them, the type of new threads they start and the type of responses they give to new members.

I can't judge any member here, but I will continue to use those clues in deciding whether to post a response.

[Vibe]

Personally, I would never use a site like this for actual research. It's the internet! Anybody could go into any forum and claim to be diagnosed with something. We tend to treat it as fact since this is a self-help site. But for actual research, I would want higher standards of verification. Also (and this was addressed above), it would likely be unethical to 'study' people like this without their consent - particularly if this person was actually interacting with members on the site. So I wouldn't wonder too heavily about people you meet here lying to you (about that). One would hope that if any such studies were conducted, their 'research' would be raked through the coals.

I also think there are much better places to do mental health research. This site is more of a resource for those who want to vent and find somebody they can identify with. As far as 'what works' vs 'what doesn't' on a large scale, I haven't found much info. I have an interest in mental health on an intellectual level and have gotten very little from this place in those regards. I can see people with some interest stopping in and reading - you can't stop that. But it's just personal interest and not real research. If you didn't want that, you'd probably have to find a private group with stringent standards for joining. Like I said, this is the internet - and psychcentral is a site that tends to come up a lot on searches.

[DocJohn]

There is no researcher that is likely to use these forums for any type of data collection.

Knowing such data collection is banned by not only our community guidelines, but also the site's Terms of Use, makes such data collection both unethical and illegal. That means they could lose their job as a researcher, and be subject to a lawsuit.

I doubt any researcher would risk their career just for this kind of data (which, as Vibe notes, may not be all that helpful to begin with).

DocJohn

[lynn P.]

I agree a researcher can't depend on an anonymous website - research depends on controlled factual statements. Since this is online a researcher wouldn't know if the poster's being truthful.