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Old 11-06-2011, 09:37 AM
lurkingforacure lurkingforacure is offline
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Join Date: Feb 2008
Posts: 1,485
15 yr Member
lurkingforacure lurkingforacure is offline
Senior Member
 
Join Date: Feb 2008
Posts: 1,485
15 yr Member
Default scary

I don't like this at all. I'm all for "getting the word out there" about trials, as I do think some folks' doctors aren't as well informed about trials as they could be. But to cull through hospital records? Who knows what else they might glean, and how it will be used, and to whom it might be sold, er, I mean shared? "safeguards"..."ethics boards"..."controls" my #@!

I wonder if there is a way of "opting out" of this, short of never going to a hospital, sort of like the "do not call" list for phone solicitation. Because that's what this really is, another way to solicit, but in a much more dangerous way.

Why don't the drug companies just advertise the trial on TV or in magazines, just like they do for drugs, and if folk are interested they can contact their doctor? Would drug companies be allowed to cull through hospital records to see if a particular drug might go with a particular patient? No way, so why is this different? Oh, silly me, it's not , it's just cheaper for the drug companies.

With the internet, facebook, twitter, youtube, etc., you can find out more than ever about what is going on in your area of interest. I don't really think lack of awareness is the main reason there are not enough people, as they claim, to participate in trials. I think some docs aren't that convinced a trial drug/procedure is worth it (we've had a couple of neuros poo-poo things we wanted to go after), and/or a lot of folks have done the research and drawn that conclusion themselves. We were invited to participate in a gene therapy trial, but did some research and declined. And the kicker as well: some people have seen what the longer-term side effects can be once a drug's approved and don't want to take the risk (lipitor, etc.).

HIPPA might as well not exist if they are going to let this go through. I'm not sure even the other doctor-patient confidentiality laws would help that much in this situation either. Would a doctor be obligated to talk to a patient that was identified as being a potential participant in an upcoming trial? If he were, would patients then view their doctor mentioning the trial to them as an endorsement of it, and something they should do? Would doctors, heaven forbid, get a small incentive to "strongly suggest" that a particular patient participate in a trial....kinda like how some docs currently get "incentives" to write scripts? I can't believe this is on the table.
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lindylanka (11-06-2011), olsen (11-06-2011), RLSmi (11-06-2011), VICTORIALOU (11-06-2011)