VCT, Clinics sharing info, and HIPPA

[brat]

There's a thread here called List VCT Cinics only-no other talk.  Well of course there will be comments, and out of respect for the thread, there's commentary that deserves attention, even if it's a couple of years old.

Someone mentioned being banned from Vince and PRA after SCREENING at both:

"Post by **** on Apr 2, 2015 at 4:34pm
if quintiles doesn't have vct, they at least have an in house version because they trade data with pra.

yesterday i talked to a guy, let's call him "fred" who said he was banned from pra because he was screening at both pra and vince. not doing studies at both, just screening at both. same thing happened to my former roommate (a guy i met via this board years ago.)

if fred is right, PRA is engaging in unethical and coersive recruiting practives, incompatable with the idea of informed consent. anybody know who their irb is? what wasn't clear to me about the facts was whether VCT was involved, and knowingly participating in this scheme. i'd like to know..."

I'd like to know too.  Even if we live in an age when everything is public, we DO have a right to our privacy regarding our health care information.

If this is happening, we (individually and collectively) have rights of legal recourse if we can prove wrongdoing (or have copies of "informed consents" which are asking us to violate our own rights). VCT processes millions of pieces of data about us. Is this even legal?  Not unless you knowingly sign soing that says you consent to it (ever wonder why those screening admins gloss over and rush us through those boring HIPPA consent forms?) 

Check this out:

www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html

VCT and any health care entity sharing identifiable information about us are in direct, legal violation of our right to health information privacy (unless we knowingly sign our rights away).  I've seen clauses in the "informed consents" at different clinics stating we waive our rights to allow sharing of info for our DNA and study results in encrypted form, but they cannot legally ask us to violate our own rights to privacy by allowing them to use personally identifiable information.  So, VCT and any sharing between clinics using our personal information is a violation of our rights under federal laws and should be publicly called out and shut down.

[cantgetright]

Whoever created VCT is probably a former study participant and they use this message board to find out what clinics don’t use vct so they can add them to the list. There’s a lot a b.s. threads and forums being posted on here from VCT employees. The fake journalist looking to interview lab rats, the post with someone asking about dual enrollment etc..

That’s why this message board is pretty much dry now.

[brat]

Im not with VCT.

[brat]

VCT was created by another "lab rat" then it was infiltrated by industry trolls.
The journalist is legit, works for a major TV station, and has dome some pretty good work.

[proresearchsub]

Feb 22, 2019 11:38:15 GMT -5 brat said:

There's a thread here called List VCT Cinics only-no other talk.  Well of course there will be comments, and out of respect for the thread, there's commentary that deserves attention, even if it's a couple of years old.

Someone mentioned being banned from Vince and PRA after SCREENING at both:

"Post by **** on Apr 2, 2015 at 4:34pm
if quintiles doesn't have vct, they at least have an in house version because they trade data with pra.

yesterday i talked to a guy, let's call him "fred" who said he was banned from pra because he was screening at both pra and vince. not doing studies at both, just screening at both. same thing happened to my former roommate (a guy i met via this board years ago.)

if fred is right, PRA is engaging in unethical and coersive recruiting practives, incompatable with the idea of informed consent. anybody know who their irb is? what wasn't clear to me about the facts was whether VCT was involved, and knowingly participating in this scheme. i'd like to know..."

I'd like to know too.  Even if we live in an age when everything is public, we DO have a right to our privacy regarding our health care information.

If this is happening, we (individually and collectively) have rights of legal recourse if we can prove wrongdoing (or have copies of "informed consents" which are asking us to violate our own rights). VCT processes millions of pieces of data about us. Is this even legal?  Not unless you knowingly sign soing that says you consent to it (ever wonder why those screening admins gloss over and rush us through those boring HIPPA consent forms?) 

Check this out:

www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html

VCT and any health care entity sharing identifiable information about us are in direct, legal violation of our right to health information privacy (unless we knowingly sign our rights away).  I've seen clauses in the "informed consents" at different clinics stating we waive our rights to allow sharing of info for our DNA and study results in encrypted form, but they cannot legally ask us to violate our own rights to privacy by allowing them to use personally identifiable information.  So, VCT and any sharing between clinics using our personal information is a violation of our rights under federal laws and should be publicly called out and shut down.

[josue]

Feb 22, 2019 15:54:31 GMT -5 cantgetright said:

Whoever created VCT is probably a former study participant and they use this message board to find out what clinics don’t use vct so they can add them to the list. There’s a lot a b.s. threads and forums being posted on here from VCT employees. The fake journalist looking to interview lab rats, the post with someone asking about dual enrollment etc..

That’s why this message board is pretty much dry now.

Is there another place where people go for information these days other than word of mouth?

[labrat1]

Anytime before reading this discussion thread I did not hear that VCT was created by a former lab rat.
I have not had a bad experiences with VCT yet. I recall that it was implemented into consent forms only a few years back. I am not sure if it has even been 10 years since it began and also since a majority of clinics started using VCT.
In retrospect I think only a few clinics used VCT but then it got to where the majority of clinics use it.
It got to where I basically came to expect it.

But I think it goes to show that there have been too many cheating lab rats who try to do more than one study before completely washing out. Someone saw an opportunity to create such a system. I guess.

But also I had a very good experience with VCT once.

I once had to decide between doing a $800 study at a clinic that was only 12 blocks away from where I live, or doing a $6000 study in a clinic that I have to get to by train and which could take anywhere from 45 minutes to 1 and a half hours.
The thing is that I was far more sure to get into the $800 paying study because I already screened and was actually told that I am scheduled to check in about a week away and that is when I will be enrolled and undergo the study procedures ( which I think did not actually involve being dosed but having a "sleep device" tested on me).
I still wanted to try and screen for the $6000 study before I checked into the $800. It was a delicate balance. I wanted to at least get into the lower paying one if I could not get in the higher paying one.

I did not know if I would be penalized for screening for both of them.
I tried calling VCT. The person I reached was a nice lady who told me that I absolutely can screen for both of them but I would have to pick one to participate in.
I said that I just want to be absolutely sure of it because I would not want to be ousted from both clinics or even one of them. Also would the staff of the clinic with the $6000 study check VCT and see that I already have screened at a different clinic and tell me that I cannot screen. with them?
The lady told me that I should not be afraid to screen at the clinic offering the $6000 study and that she herself realizes that people participate in studies to earn money and often have to balance what study to do, one that pays less but which is more likely to accept you, or one that pays more but which may not accept you for different reasons such as there being many volunteers to choose from, being an alternate, etc., and she told me that the clinic with the $6000 study will understand and won't tell me that I cannot screen in two different clinics and they know that people screen in different places all the time.
However, she told me, if the clinic staff do tell me that I should not have screened for any other study than theirs, that I can tell them to call her directly and she will tell them that it is within VCT rules for volunteers to "Dual screen" as long as they choose one study afterward and do not participate in two (or more) studies.
She gave me her direct phone number and told me that she herself is the CEO of VCT so she is the only one they need to talk to.

So I screened for the $6000. I got chosen for it. The staff did not make a big deal of the fact that VCT showed that I recently screened at a different place. They just told me to make sure I choose only one study (it seemed they were hoping I would choose theirs but they first had to tell me I passed the screening). I had to cancel the one that paid $800 and I sort-of hated to do it because the clinic was expecting that I would enroll since they were sure they would take me. I had a bit of a good excuse though, not that I just found another better-paying study.
The $800 study had changed the check-in day and I told them that since they changed the check-in day, it throws off my work schedule and I could not do their study.