6 ms·
I don't think it's unreasonable to keep the personal details of trial participants secret, for example
by cnorthwood 6y ago
I don't think it's unreasonable to keep the personal details of trial participants secret, for example
- dpwm 6y agoApparently this is not what has been breached. From the article: > no BioNTech or Pfizer systems have been breached in connection with this incident and we are unaware that any study participants have been identified through the data being accessed
- idclip 6y agoI find it interesting that you argued for hiding this kind of information, while not knowing what was stolen. Yes, your argument is trivially true, how does it help us move forward?
- vntok 6y agoThe grand-parent commenter wrote "If they have secret data, that really ought to be a reason to withdraw their patent.". The parent commenter helpfully explained how such statement is trivially false, in that there is value in keeping some data secret even though patents are involved.
- idclip 6y agoI see it - there is something there. Ill read it again and inspect my own reactions to it. Thank you! I mean that
- crispyporkbites 6y agoDo they need to collect this information in the first place?
- rad_gruchalski 6y agoIs it being collected?
- consp 6y agoYes, you want to contact them if some issue comes up which was not immediately clear.
- La1n 6y agoPfizer should not have this data, normally it doesn't leave the investigation site. Pfizer has only coded data (pseudoanonymous) that does have subject names replaced with numbers. edit: note that subjects can still be identified with this data, just not directly.
- mc32 6y agoCROs handle that data. Also adverse effects are strictly handled by third parties. This is likely an attempt at IP theft. Probably a second rate state actor.
- mft_ 6y agoCROs act as an agent of the Pharma company, so shouldn’t have it either. Patient identifiable information shouldn’t leave the investigator’s site.
- ekianjo 6y agoNo, there should be no reason for Pfizer to collect this data. This could be done by a third party.
- stef25 6y agoThose are never, ever stored with the pharma companies. If FDA finds out they are you can close shop.
- deleted 6y ago[deleted]
- pas 6y agoWhere they are stored? At the investigator of the trial?
- stef25 6y agoYeah, wherever they are usually stored. As I said in another comment - the only data the pharma company gets to "take home" is anonymized (partially, ie. a number instead of a name) and blinded (you don't know if they received drug or placebo) The company must reconcile the patient data with the trial data (on premise), in a scenario like: "liver enzymes abnormal after administration of vaccine, is there anything in the patient data that could clarify that (apart from the vaccine itself)". Someone has to painstakingly go through all that data. Source: this was my job
- labawi 6y agoAfter the study is concluded, won't they get the non-blinded (still anonymous) version? During efficacy/side-effect analysis you should definitely use only blinded data. After confirmatory statistical analysis, it seems reasonable to go over the data in an exploratory pass to possibly discover/hypothesize why/when/how the medicine works/fails/interacts. Or do they just get the aggregate report?
- chokeartist 6y agoInteresting. I never thought there was a "hard firewall" between the pharma and the end-users in the clinical trial. Now that I think about it - yeah that's probably a really good thing.
- vikramkr 6y ago
- throwaway894345 6y agoNot only is it reasonable, it's required by law (HIPAA).