Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
People are asking about the new "Chronic Lyme Tracker" program being advertised. I've not been able to sign up for a free trial due to server issues, but I've read through their really long "Terms of Use" and "Privacy Policies" in an attempt to see where/how the information can/will be used.
Please note quotes below that may (?) be of concern to those putting their personal medical information online in this format.
Terms of Use
Section 11. ... **User Upload Information will be treated as non-confidential and non-proprietary and we will not be liable for any use or disclosure to anyone**,
including but not limited to claimed intellectual property owners.
When you upload User Upload Information via the Web Sites, **you irrevocably grant to Company, its affiliates and its Company Representatives a non-exclusive, worldwide, royalty-free, perpetual, irrevocable, unconditional**,
fully-paid license containing, without limitation, all right, title and interest in User Upload Information, including, without limitation, all patents, trademarks, service marks, trade names, trade identities, copyrights, trade secrets, logos, domain names, know-how, source code and object code, mask-work rights, inventions, moral rights, author's rights, algorithms,
rights in packaging, goodwill and other Intellectual Property Rights and proprietary rights whatsoever in User Upload Information.
**You further agree that Company, its affiliates and its Company Representatives will have the unfettered right throughout the universe, in perpetuity, without any credit or compensation to you, to use, reuse, access, store, copy, reproduce, rearrange, sell, lease, rent, distribute, redistribute, modify, alter, display, archive, sub-license, transfer, post, translate, create derivative works,**
assign, loan, pledge, grant a security interest, grant a lien, encumber, convey, download, exchange, exhibit, perform, exploit, upload, transmit, broadcast, host, index, cache, tag, encode, compile, form a collection with, or publicize or adapt, reverse engineer, disassemble, decompile, reverse assemble,
**modify or attempt to discover any source or object code any of the User Upload Information or portions of User Upload Information, and your name, voice, likeness and other identifying information**, in any form, media, software or technology of any kind now known or developed in the future for any purposes whatsoever (including for advertising, marketing, publicity, commercial purposes, promotional purposes),
**in any jurisdiction throughout the world**, including, without limitation, developing, manufacturing and marketing products using such User Upload Information.
**You hereby waive any moral rights you may have in and to any of User Upload Information, even if such material is altered or changed in a manner not agreeable to you.**
You agree and understand that Company, its affiliates, and Company Representatives are not obligated to use User Upload Information submitted through the Web Sites or otherwise, and may alternatively choose to discard, and limit or block access to User Upload Information without any liability whatsoever.
Privacy Policy
We do not share any information submitted in the forum **except what is shared voluntarily by you**.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
WHOA!!!
This doesn't sound like you have any privacy or control at all.
Posts: 2888 | From USA | Registered: Mar 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you tin. i dont know how to make sure the majority of us here understand the ramifications.
until ppl go thru the "duck" process i know it is hard for them to understand.
i dont like to cry wolf...but the lyme community as a whole has a number of problems to face in the future
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EXACTLY!
And here is what you see if the website's FAQ section, so unless you read that LONG boing fine print you'd miss it. In fact, this appears to go totally against what the fine actually print says.
???????
FAQ
"Q: How is my personal data protected?
A: Health records privacy and confidentiality is a priority for us. CT:L has full security functionality in compliance with HIPAA and meeting or exceeding industry standards.
Our servers are secure, stand alone machines designed to protect the information stored on them. Personal data is password protected and encrypted. Even should there be unauthorized access to the data, it will be undecipherable.
After the free trial period is complete, we will erase the data of any users who do not choose to continue using the application.
Q: Will my data ever by used by third-parties?
A: HIPAA permits the de-identified use of medical data for research purposes (i.e. to evaluate the effectiveness of treatments, health practices, etc.).
This means that anonymized data (data that is not associated with any personal identification) can be used, pursuant to certain legally defined protocols, to improve the state of the art of medical practice, including the treatment of Lyme.
*** We hope that we will eventually be able to provide useful data to researchers seeking to improve knowledge around lyme complex and its treatments.***
We will never sell or otherwise provide names or contact information to third-parties."
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My personal opinion- with these contradictions this doesn't pass the sniff test.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This section concerns me too.
"We hope that we will eventually be able to provide useful data to researchers seeking to improve knowledge around lyme complex and its treatments."
I've heard NOTHING from our docs promoting this and if this site was going to be HELPING us as patients, or THEM as doctors, it would seem that would be the case.
On one hand, it seems to want to fill a need we have for sharing treatment and experiences in one comprehensive format. There isn't any one database that stores lyme treatments, efficacies, etc., as of yet.
On the other hand, in their T&C's, they say that they may share your name and other private information. That is a no-no! Privacy is important. Down the road they could sell your email address to vendors of health supplements &/or treatments. Nobody wants to be inundated with spam email.
Posts: 161 | From vancouver island | Registered: Feb 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
PFFT.
"Lyme Complex and its treatments" - well ain't that a new and special term!
Tincup, I won't re-quote what you posted originally. Any part of that should be enough to make a person run far away from that site.
tickle, although I agree with you that there isn't one database which stores tx, efficacies, etc. I can tell you for sure this is not the way to do it. If it was, we'd all know about it from our docs. Please people, stay away from sites such as this one and think twice before posting very personal information anywhere on the net.
Posts: 1885 | From here | Registered: Jul 2012
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