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 Use of information 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Use of information
While I know that complete confidentiality isn't possible on a forum like this, it would be nice to have some rules or guidelines about use of information, thoughts, feelings posted on our discussion forum.

While I don't mind the things I have posted here being used for legitimate research, I do object to my postings, particularly those talking about my family, being used for a published book or article. I believe that there is at least an implied request that information we have shared here remain between us. I certainly never thought of it being used for profit via a book. At the very least, an author has a moral obligation to prominently inform all forum members that what they write may be used in a book they are publishing. (more than just 4 or 5 casual mentions within one discussion topic)

What are our rules as far as this is concerned, or do we have any? BTW, the link to Important Information no longer works.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Oct 10, 2011 1:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Use of information
When I joined this forum, I was under the impression it was set up as a safe haven for caregivers to share whatever they wanted in a safe environment. I don't think that this mission has officially changed, although some of the postings have taken things in other directions.
There is also a part of the forum where people who have LBD can post and the rest of us cannot see, let alone post there. I don't think those posts should be reproduced or quoted in another place either.
I think the LBDA administration needs to perhaps repost the mission of this forum, and I personally don't believe that sharing of our postings in other places, particularly in books for publication would be acceptable to any of us. I would not want any of my posts to be reproduced or quoted without my written permission. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Oct 10, 2011 2:18 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: Use of information
I was shocked, although I shouldn't have been, when I checked my name on google and found numerous forum postings which I had written. I am not very happy about that.

Much too late to worry about it now but I do not like it.

Dorthea

[Dorthea with only one 'o']


Mon Oct 10, 2011 2:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Use of information
Kate, I agree 100%. We share a lot of intimate information about our LOs here--it's an important and necessary part of the forum. We should never have to see it turn up elsewhere!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Oct 10, 2011 3:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Use of information
I don't believe the LBDA Forum has a privacy policy. Yahoo!Groups does have a privacy policy such that users are expressly forbidden from re-posting info elsewhere, outside of the particular Y!G where the info was posted.


Mon Oct 10, 2011 4:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Use of information
robin wrote:
I don't believe the LBDA Forum has a privacy policy. Yahoo!Groups does have a privacy policy such that users are expressly forbidden from re-posting info elsewhere, outside of the particular Y!G where the info was posted.
Well, moderators? Is this true? No privacy policy?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Oct 10, 2011 5:21 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Use of information
Official policy or not….

Not nice…

besides being illegal….

plagarism comes to mind….

coypright….

what about bad journalism…..footnotes….anyone?

but, most important….immoral, unethical, and just plain not nice….

remember….never argue with someone with dementia….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Oct 10, 2011 5:46 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Use of information
i have an online art forum.. and its closed.. no one can get in or see in..with out an invite or us allowing them in... i thought this was the same since i had to fill out a form and get approved... but i just googled and got many posts based on my screen name and or subject..

is there a a way to close it to the outside?? or is that not what the folks that run this want??

i have to say, now that i think about it... that is how i found this place , by googling a question about lbd..??

did some one say the yahoo one is closed??

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Oct 10, 2011 9:31 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
You don't have to be a member to read the posts -- you only need that to post. So anyone could look at any post at anytime. And anyone could do some copying. If your neighbor is curious about that odd disease your loved one has, she can easily pop online and wind up here. If she reads posts she may come to recognize your screennae. It is as likely for someone to read your private thoughts and venting, etc., that way as it is that you would be exposed in a book for caregivers.

(I used to be a forum moderator and I tried very hard to make sure members posted only their own material, but many members didn't even get why I'd care. It's out there on the Internet, so it must be public property, right? Wrong, but that is a very common perception.)

You go through a little (very little) screening to join, but there is no protection from nonmember eyes. Everything we post is "public" in a sense. Best to keep that in mind.

We have at least one member who is an author, and who has been actively writing a book about early stage LBD. She is a legitimate member, with a husband who has LBD. Like all of us (I assume) she has probably learned a lot from reading other people's posts. Because not many caregivers on here have loved ones in early stage, she may not have picked up as much as some others have. We all want to share and learn from each other, I assume. That someone may share what she learns with a wider audience makes me happy. I'll be disappointed if she violates confidentiality in doing it, but I am not expecting that.

Pat has stated twice, in two different threads, that her book contains no private information from these forums. She has also been very upfront about writing a book since she joined. This is no last minute surprise.

So before we panic and throw around accusations, I recommend taking a deep breath. Also realize that this is not a "private" forum -- anybody can access and read it.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Oct 10, 2011 9:32 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Use of information
I would like to think we each would respect one another's privacy and private thoughts but as Jeanne has pointed out that people can read the forum not being a member but can't reply so let me do some investigating and see what I come up with ! As to what policy is in place as far as privacy I am not really sure!

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Irene Selak


Mon Oct 10, 2011 9:55 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
Cindi, I am sure it is technically possible to make this a closed forum. But what would that accomplish besides making it more difficult for new people to find us?

Pat the author would still be a legitimate member, and she would still be writing a book. (Which I think is a very positive thing.)

People with less than honorable intentions could still join the forum by lying. But those people would have no qualms about lying, would they?

My CaringBridge site is closed. It is not hard for me to personally know or know of anyone who would be interested in my caregiving experiences. Perhaps that is true of your art site, too. But when you are serving the public, how on earth could you set up meaningful screening?

When you put something in print on the internet, it is pretty hard to keep it very private.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Oct 10, 2011 9:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Use of information
Cindi,
Right - the LBDcaregivers Yahoo!Group is closed as is LBD_caringspouses. You have to be a member there to read, reply to, and search posts. On the LBDA Forum, you only need to be a member to reply to posts.
Robin


Mon Oct 10, 2011 11:12 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Use of information
jeanne ..
i was only thinking of the privacy area.. sharing things they might not want the world to know...

i have no issue at all with someone writing a book about their life or even sharing tips, some may have been on here... and helping others.. i read something from pat mentioning her book , very close to when i started...so i was aware....

the art site was mainly closed in the beginning, we painted portraits of grandkids or kids.. and we wanted to keep them off the net... and as time has gone on, we have all become good friends and talk about a lot of stuff we'd rather we kept private.. but as i mentioned earlier, that might solve the privacy issue here.. but might not allow folks to find this forum, as easily...

maybe just having a disclaimer or notice that this is not a closed forum , so those that are new, will be aware... from the beginning...might be an thought???

talking about it and having it brought to the forefront now... will make me a bit more aware about what i'm sharing... and at the same time keeping my privacy..

this is the best place i have found for information and support... i appreciate so much how everyone has enlightened, supported, and helped me. i will be here...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Oct 10, 2011 11:33 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
I am sorry, but I don't have time to read every thread, nor time to read all of threads that I am interested in. So the news of the book was a surprise to me. It is not something that I have seen prominently posted so that all viewing the forum would know about it.

Pat has assured us now that there is nothing private in the book. I understand that some forum "leaders" are reviewing it. I would ask that those reviewing this draft keep in mind a broad definition of "private." What one person might consider "no big deal" might certainly be a big deal to someone else.

I realize that there is nothing that can be done at this point, even if something that would bother one of us were in this book. But I do think that, even without a closed forum, we could at least state some "good faith" guidelines.

I am sorry that this situation has come up. But from this point on, my posts will be fewer and far more circumspect. This forum, and many on this forum, have been a tremendous support for me. I might even go so far as to say that they have helped preserve my sanity. It will be very painful for me to begin using such caution in anything I might say here.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Oct 10, 2011 11:36 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Use of information
robin thanks.. sorry, we cross posted...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Oct 10, 2011 11:36 pm
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