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 Use of information 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Use of information
my post was not meant as a personal attack….

just a collection of facts as I remember them as for using works created by others…..pretty much wherever they come from….

I do believe, thou….while we are on the subject….

a written work should be ones own creation….unless credit and permission is granted…..

many, many lawsuits out there….

my interpretation is this….

if a writer where to take a conversation from this forum….remove all the names, even try to disguise it some….

you are not free to do so…..without liability in good ole USA……

you are not unable to do so….just not totally 'FREE' to do so…..

…..

I am opening up more and more every day in more and more places….

But, NO ONE has my permission to tell my story without my permission…. (.)

I want it told right….

So….if any of me appears in a book….run it by me first…or my legal me….I want to MAKE sure it helps others….

_________________
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 11:40 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Use of information
Good Morning All,

In regard to the privacy issue here on the forums, I am looking into it but as this information came to me last night there wasn't much I could do as the LBDA was closed and I didn't feel I needed to bother people at home, that it could wait until this morning but as I looked around I found nothing about privacy as a policy, yes the LBD support groups on Yahoo are closed but as it was mentioned by someone here there really is no way of knowing for sure who is who. With that said I started going through our membership pages and found we have well over 2000 members that are registered users but I also found on just the first few pages of 50 there are up to 35 users per page who have never posted a word.Plus all the people who can view our pages not being registered, in fact many times I have come in the read and been able to but when I try to reply that's when it lets me know I must sign in. So with that said I do think many of us "thought" what we said was private and in fact isn't and probably is true for the entire Internet and believe me I am feeling this too as there have been times I have written very personal things about my LBD experience and if I ever gave anyone the impression that it was private to the rest of the world I do apologize for that, I would love to hear from Lynn, Pat, Kate why you thought it was private just so I know where this is all coming from.

Just as soon as I talk with someone this morning I will get back with some sort of answer to privacy.

In regards to a book, I know for a fact that the Whitworths wrote their second book with many words of other people's stories but I am sure it was with permissions from each person, as I myself was asked. I will do my best to find that information out too !

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Irene Selak


Tue Oct 11, 2011 8:14 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Use of information
Irene - thanks for looking into this. I'm guessing that one person's understanding of "private" and another's may be 2 different things. When I joined, and the only way you could become a member, was to write a little of your own story so the admin. reading it could hopefully tell if you were legit. That meant to me that the LBDA is trying to keep only CGs or family members part of the group. The rest of the world I know could and can read the posts, but you had to have some amount of legitmacy to become a member. That said, in reading through the posts before and when I became a member led me to believe that the purpose for this forum was to be a "safe" place for CGs to come and vent, share, ask questions, etc. It seemed like an intimate group of people who were all going through the same issues as CGs of people with LBD and possibly other neuro. diseases. It had a feeling of intimacy and safety and trust. So my interpretation was that those of us who were posting had this implicit sense of keeping our info. as CGs within the confines of the forum.
Perhaps there isn't a policy as such about privacy, but it seemed implicit to me. I think the forum has taken some twists and turns and continues to evolve. Perhaps this is the time to clarify or reiterate the mission and the privacy issues and post them perhaps for feedback? Whose forum is it? Maybe that's the ultimate question! 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.


Tue Oct 11, 2011 8:34 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
LTCVT wrote:
It had a feeling of intimacy and safety and trust.


Well put, Lynn.

I work in IT. I know as well as anyone that the Internet is no place of privacy. But I suppose I expected more from our members. To tell the truth, I probably would be much more fatalistic if it were a stranger writing a book. But it isn't. It's one of us. And though the book might be mentioned in a couple of threads (out of hundreds), there was no prominent mention or discussion of any publication. What I would have hoped for might have been an "I am writing a book" thread. It is a matter of respect for each other. I thought we had that.

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]


Tue Oct 11, 2011 8:57 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Use of information
My perception was similar to Lynn's, in that, because of the screening process, we knew we were sharing the forum only with other Lewy caregivers or family members. The implicit sense of privacy resulted from the shared concerns. Perhaps 'private' is not the correct term but there was, nonetheless, a feeling of group loyalty and respect for each others' personal information.

_________________
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.


Tue Oct 11, 2011 9:32 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
Kate, there were many "I am writing a book" posts back when Pat joined. It was controversial then, too. Is she supposed to start every post with that statement? Would we then be on her case for promoting her own project?

Mockturtle, I think there was and is, a feeling of group loyalty and respect for each others' personal information. Why do you put that in the past tense? Because someone is writing a book?

Frankly, I am dismayed by this adversarial attitude. We should be delighted that someone is writing another Lewy book. We should be proud that one of us is making a contribution to the small pile of material available for new caregivers. Instead we assume that our "privacy" is being invaded. Nevermind that anyone with internet access can already read everything we ever wrote. Nervermind that none of us has read the book yet and that the author assures us that she has not used any personal information from these forums, we jump to the conclusion that she is being disloyal.

Instead of being a cheering section for what one of us is doing to help the cause of disseminating information, we are on edge because we "expect more from members."

I am embarrassed for us.

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


Tue Oct 11, 2011 10:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Use of information
Jeanne, I was not aware of an 'adversarial attitude' here. Just concern for private information. Please be careful how you phrase things.

_________________
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.


Tue Oct 11, 2011 10:39 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
For anyone who thinks that Pat has been sneaking around without making her book-writing clear, try this post: http://www.lbda.org/community/forum/viewtopic.php?f=13&t=2585&sid=05708065497ea5b603fca53b704f3497

Dorthea said at that time "I think your writing will prove to be quite valuable as time goes on. Not only to yourself but to caregivers everywhere."

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


Tue Oct 11, 2011 10:54 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
Jeanne, the posting you provided a link to is titled "The need for social support," not "I am writing a book." If you will look, you will see that this is a thread that I paid very little attention to. There are no postings from my screen name. This is not what I would call a prominent mention of the book. And some of us don't have the time to peruse every thread. Actually, I am at work and shouldn't be looking at this now, but it is important to me.

I have poured my heart out on this forum. Perhaps I shouldn't have. Perhaps I should have been suspicious of other participants or viewers. The trust I have felt is damaged. Whether or not anything I have written is quoted, paraphrased or just alluded to, I am disappointed.

I realize that Pat may have believed that she had informed all of us, but without being a bit more obvious in the title of her thread, it is unreasonable to believe that we all read it and agreed with what she was doing. I will need to see a copy of the book before trust can be rebuilt (assuming my library will carry it, I will not pay for it just to find out what was or wasn't written). Pat does have a right to write about her own life. And a few tips are OK, provided there is no way to identify any one family with it's information. But the approach to this could have been handled better.

What this situation does illustrate for us is that we cannot be as candid as we would like to be here and that even a request for privacy may be ignored. Whether the privacy issue is more firmly addressed or not, trust will need to be rebuilt in some way.

BTW, I don't consider my expression of concern adversarial. I'm not the one who mentioned Pat's name. But I do think I have a right to express my disappointment and hurt.

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]


Tue Oct 11, 2011 11:17 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Use of information
To one and all, I hope the following will allow this subject to be put to rest and I for one was well aware of Pat writing a book for early LBD caregivers and it has been addressed in earlier times and I do know it has been posted earlier on and I like Kate don't get to read all the posts but I try and when a subject needs to be addressed such as this one I do my best to find the proper information and I also want to add that none of us should ever put personal information on the forums such as addresses and telephone numbers.


Privacy and Security
LBDA is committed to protecting the privacy and personal information of individuals who contact the Association. Information collected by LBDA is for the sole purpose of furthering the Association's mission, and will not be sold, rented or traded. The only personal information collected by the LBDA is that which is freely provided by contact through phone calls, mail, donations or our website. Personal information is stored in a secure environment and access only by authorized personnel with a legitimate and specific business purpose. By providing information, you consent to the collection, and understand that it may be used by Association to make further contact. To opt out of any or all methods of contact, follow the instructions on literature, if provided, or notify us by email (see below, by telephone or letter (see phone and address information below). Please note that discussions on group message boards are pubic information, and not protected under the privacy policies.

Section 5. User Submissions

a) If you submit an article or other form of information, including postings to a listserv, message board, or web log, (“Submission”) on this Web Site you do so with the understanding that the Submission is not confidential. By posting Submissions on the Web Site you automatically grant the LBDA a royalty-free, perpetual, irrevocable non-exclusive license to use, reproduce, modify, publish, edit, translate, distribute, perform, and display the Submission alone or as part of other works in any form, media, technology whether now known or later developed, and to sublicense such rights to sublicenses.

b) When you submit information, your are responsible for the consequences of its posting. When posting an article or other form of information you agree not to do the following things:

• Post material that is copyrighted, unless you are the copyright owner or have the permission of the copyright owner;

• Post material that reveals trade secrets, unless you own them or have the permission of the owner;

• Post materials that infringes on any intellectual property rights of others or on the privacy or publicity rights of others;

• Post material that is obscene, defamatory, threatening, harassing, abusive, hateful, or embarrassing to another user of the Web Site or any person or entity;

• Post a sexually explicit image;

• Post advertisements or solicitations of business;

• Post chain letters or pyramid schemes;

• Impersonate another person, or

• Take any action that might interfere with the functionality of this Web Site or the materials contained on the Web Site.

c) LBDA does not screen Submissions of material in advance and is not responsible for screening or monitoring any Material posted by Web Site users. If it comes to the attention of LBDA that there may be Material that does not conform to these Terms and Conditions, LBDA may investigate the situation and determine in good faith, and in its sole discretion, whether to remove or request removal of the Submission. LBDA has no liability or responsibility to Web Site users for performance or nonperformance of such activities. LBDA reserves the right to expel users and prevent their further access to the SITE for violating these Terms and Conditions or the law and the right to remove Material that is abusive, illegal, or disruptive.

The Forums are generally public in that all individuals seeking information regarding LBD and support can access the posts within the Forums to read and review the comments shared.


If an individual wants to comment, reply or post information within the Forums they must join the Forums to do so.


The Forums are not confidential nor does LBDA policy state that confidentiality or privacy is guaranteed.


Even on non-LBDA sites where the Forum is closed to all non-registrants there is generally not a guarantee of privacy or confidentiality since individuals within the Forum could export individual postings to external sites.


In all cases we anticipate that individuals will be respectful of each other’s postings and not republishing details, identifying information, names, or any identifying information related to personal accounts, stories or comments shared.


LBDA does screen out requests received from individuals requesting to join the Forms who identify themselves as advertisers, authors, pharmaceutical companies or those selling products or services.


In the event that someone’s intent to join the Forum is not immediately know but the Forum Administrator becomes aware that the Forum member is using the Forums to market, sell, solicit or in any manner misrepresents themselves, they will be banned from the Forums.


In the event that someone tries to publish or export postings, comments or stories from the Forum site, the Forum Administrator will follow-up with that individual to review their intent and remind the individual that they are to respect those individual postings by not sharing or publishing identifying, personal or individual postings or information in any form without the written permission of the individual is question.


It is also the case that the Forums are not to be used as a screening resource for group based research or general information gathering to be used in any form outside of the use provided.

I certainly hope that this information is helpful in understanding our policy and of course if there are questions please let me know. I wish you all well.

_________________
Irene Selak


Tue Oct 11, 2011 11:21 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
Thank you, Irene.

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]


Tue Oct 11, 2011 11:29 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Use of information
That is very clear and helpful. Many, if not most of us, sought this forum as a lifeline while overwhelmed with our Lewy LO's needs and behaviors. It's rather like calling a hotline in a crisis, I guess. The last thing we should have to be concerned about is someone using the information for their own commercial interest or even publishing or posting it in another venue. I am NOT suggesting this is what has happened! It's just that the subject of privacy came up and some of us wanted some clarification. Thank you, Irene, for providing that.

_________________
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.


Tue Oct 11, 2011 11:42 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
mockturtle wrote:
The last thing we should have to be concerned about is someone using the information for their own commercial interest or even publishing or posting it in another venue. I am NOT suggesting this is what has happened!


Thank you for that clarification. I am not dismayed with a general inquiry about privacy. Maybe I'm reading too much between the lines, but I sense a strong implication that Pat (the author) has somehow violated the loyalty of the group. That feels adversarial to me.

Kate, you say "I realize that Pat may have believed that she had informed all of us, but without being a bit more obvious in the title of her thread, it is unreasonable to believe that we all read it and agreed with what she was doing." Pat did not and does not need any of us to agree with what she did. Authors don't need permission to write books. She repeatedly told us she is writing a book. Often she also said she'd like our feedback on a portion of her text. Some people provided that feedback. Some people provided encouragment.

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


Tue Oct 11, 2011 12:12 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Use of information
Here is where there is a problem here….

not a big one….

but one to discuss…

……lets agree to discuss…and not judge…but make decisions on what the facts are and how they relate to each of us…..

1) I want to share 'MY' info….but I own that…it is mine to control either before or after the fact….
2) I want to share me, and I want you to share you….you are helping me and hopefully there's a little help coming from me…

3) there is a deep hole with almost no knowledge that is screaming to be filled….
4) books are needed…
5) I wish the author nothing but success with their endeavor…and I hope it helps fill that hole….and that it selfishly for me-helps me tremendously…(I am sure it will)…I hope it helps you too (whoever you are)

6) now for the part that I need explaination for…
Sometime back I reached out on this forum and asked if anyone was researching early stage as I still have tremendous insight into this…I am special…Mayo diagnosis, Mayo research subject, Dr. Boeve is personal doctor who diagnosed me, I getting ready to attend Mayo Habit program….I have something to offer, and I am in the open….I was warned for that….and I respected that request and deleted some of those posts…..which I thought was unfair…..to me….for in possiblity of information exchange with a researcher…..the exchange with hopefully be mutually beneficial…..
So….how is this different….?

Isn't this just what I was told didn't exist? Please explain….in the open….

A) someone is fishing for info on this forum with permission, on the subject of me? when I was told not to offer for this thing?
B) review by staff of this site is not enough….trust me…..this is not Lewy speaking…this is journalism, law, and just being nice….
C) every person who any part of their story was 'USED' in any way…..MUST BE credited and their permission or by means of being granted or purchased MUST be obtained….liability doesn't end when book is published….is book being self published? Have every person who story been excerpted in any way, or their words either lifted or paraphrased in any way been given this review?
D) I am asking the author for this to take place for me specifically before publication….I 'OWN' my story….I am writing my own book….my heirs will probably finish it….it will be credited appropiately and then some…
E) I would love to be the authors friend and also each and every one of you…..

I believe there is more to discuss, the author has more to discuss with individuals.

EDIT: remember I have permission to forget…or a few other things….
I was specifically that researchers were not allowed on the forum….they did not come here….by PM….please explain…in the open….

EDIT: 2nd time…you know Lewy in action….inteligence still there….if given unlimited time to get it right….
Question:
It is okay to be a researcher on the forum and post this? and ask specifically for answers to questions to be put into the book?
It is not okay for a patient to ask if there is a researcher on the forum? so the paitent might be helped?

_________________
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


Last edited by BayouCajun on Tue Oct 11, 2011 12:36 pm, edited 2 times in total.



Tue Oct 11, 2011 12:27 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
You're right, Jeanne. Authors don't have to ask permission to write books. Actually, First Amendment law protects them, even when they don't have permission to use information (except information under copyright or trademark), even if what they state is wrong, so long as there is no malice in what has been written. (I was a journalism major.) I just expected more from members of a forum that I had come to trust and confide in. At the very least, it would have been nice to have a prominent mention of the book (like in the title of a thread). What has happened has happened, but I hope that this experience will help when this type of thing comes up again.

Irene has provided us with some excellent information - guidelines we can use for future situations. And I have deleted anything that could be used to identify me from my profile and my signature. I was delighted to find that doing this was reflected even in previous posts. With that, I will close off from this thread. I think that Irene has settled things.

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]


Tue Oct 11, 2011 12:30 pm
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