Earlier quoted context omitted.
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The chairman of Thompson Reuters, who professionally fact check information for Facebook, is on the board of Pfizer which is a grave conflict of interest and there's been repeated examples of them lying outright so all bets are off on who you may suggest is being misleading.
Covid-19 vaccines and treatments: we must have raw data, now
71–80 of 257 posts
Re: Covid-19 vaccines and treatments: we must have raw data, now
#72At this point the original phase 3 trials are pretty much irrelevant, we have so much more data now from the actual use of the vaccines. They really play no role at all now. In terms of effectivness we're three major SARS-CoV2 variants further, and for looking at rare side effects we have billions of doses now compared to tens of thousands in those trials. I'm all for putting pressure on everyone in Science to publis…
> This kind of data is likely more complicated because it's really hard if not impossible to anonymize the actual patient-level data. It still should be as accessible to other scientists as possible. I disagree with both parts of this. Why not associate each patient with a number then log all data against that? Patient names and other identifying information should simply never be attached to trial-related data (exce…
The more data you release, the more difficult it is to ensure that subjects cannot be reidentified by combining the "anonymized" dataset with other publicly available data.
Important note: It's not just a case of putting in the work and being willing to share. There are impossibility results in this space. That is, there are reasonable formal threat models for which it is mathematically impossible to release any version of the dataset that is (a) useful (ie contains enough data to replicate findings) and (b) not subject to unacceptable levels of reidentification.
I am generally in favor of releasing data and code/spreadsheets, but anything involving patients becomes difficult quickly. There are also reasonable middle grounds between "no access for anyone" and "throw it in a public s3 bucket". E.g., making data more available to researchers and medical practitioners -- or even sufficiently interested & motivated members of the public -- but under strict data handling rules, enforceable audit trails, and legal consequences for being reckless with sensitive patient data.
Hell, odds are better than even that your employer made you sign a document that would allow them to sue you into oblivion for forwarding some sure-to-be-doomed product launch draft to the wrong person. Being at least that careful with fine-grained medical data on hundreds/thousands of patients isn't exactly unreasonable...
Drawing a hard line on 100% complete, anonymous, and consequence-free access to troves of patient data isn't a reasonable position.
[1] https://journals.plos.org/plosone/article/file?id=10.1371/jo...
Re: Covid-19 vaccines and treatments: we must have raw data, now
#73At this point the original phase 3 trials are pretty much irrelevant, we have so much more data now from the actual use of the vaccines. They really play no role at all now. In terms of effectivness we're three major SARS-CoV2 variants further, and for looking at rare side effects we have billions of doses now compared to tens of thousands in those trials. I'm all for putting pressure on everyone in Science to publis…
> This kind of data is likely more complicated because it's really hard if not impossible to anonymize the actual patient-level data. It still should be as accessible to other scientists as possible. I disagree with both parts of this. Why not associate each patient with a number then log all data against that? Patient names and other identifying information should simply never be attached to trial-related data (exce…
And you can't simply strip out that data, because a lot of the subsequent analysis of effectiveness is dependent on it.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#74Earlier quoted context omitted.
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We've banned this account for repeatedly breaking the site guidelines. Crossing into personal attack and snark, besides being against HN's rules, has the effect of discrediting your own point of view. That is a poor trade to make in exchange for a momentary bit of venting. Not only that, but if your view happens to actually be correct, then it has the side effect of discrediting the truth, which is not in any of our…
Re: Covid-19 vaccines and treatments: we must have raw data, now
#75https://sciencebasedmedicine.org/what-the-heck-happened-to-t... has some stuff to say about the author (about 2/3 the way down), including signing a petition doubting that HIV causes AIDS. > Indeed, Doshi has history of playing footsie with the antivaccine movement, amplifying antivaccine conspiracy theories, downplaying the severity of influenza and thus feeding antivaccine narratives, using sleight-of-hand to downp…
I love how people attack the character of anyone who says anything even remotely against the pharmaceutical industry and their narratives. They like to find some sort of evidence that they are one of those "anti-vaxxers" and think that discredits them. Now they don't have to debate anything. How about you argue with the points made in the article? Do you disagree with anything in the article? Is their dreaded "misinf…
Re: Covid-19 vaccines and treatments: we must have raw data, now
#76Earlier quoted context omitted.
Yup. I'm not sure how many non anti vax people who comment in support of BMJ actually read the original article. If you are them please reveal yourself and explain how you found nothing wrong with the original article. Most of these comments in the threads just seem like tired knee jerk anti big media / anti vax memes.
I'm a pro vax person, and I've had three vaccine doses. But I have a few anti-vaxers around in friends and family, and it can be hard to argue with them that vaccines are totally safe and effective for them (not talking about the population as a whole). I would like safe and effective vaccines, and I would like to know that the vaccines I have been administered have really got the backing of truly scientific trials.…
That is especially hard since there is simply no way to know for sure whether the vaccine will be "totally safe and effective for them": https://news.ycombinator.com/item?id=29206892 .
Re: Covid-19 vaccines and treatments: we must have raw data, now
#77Re: Covid-19 vaccines and treatments: we must have raw data, now
#78Earlier quoted context omitted.
I believe patients have a right to privacy that deserves careful protection.
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Now here you are, asking ceejayoz loaded question after loaded question. You sure look like you're trying to find some reason to dismiss what he says. That's not cool, especially since you started us down the "discuss the actual points" path.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#79Who's responsible when it turns out that the anonymization of highly confidential patient data in the raw data is flawed, as it inevitably is?
Re: Covid-19 vaccines and treatments: we must have raw data, now
#80Earlier quoted context omitted.
Yup. I'm not sure how many non anti vax people who comment in support of BMJ actually read the original article. If you are them please reveal yourself and explain how you found nothing wrong with the original article. Most of these comments in the threads just seem like tired knee jerk anti big media / anti vax memes.
I'm a pro vax person, and I've had three vaccine doses. But I have a few anti-vaxers around in friends and family, and it can be hard to argue with them that vaccines are totally safe and effective for them (not talking about the population as a whole). I would like safe and effective vaccines, and I would like to know that the vaccines I have been administered have really got the backing of truly scientific trials.…
And it doesn't help that there have been multiple leaks now regarding companies like Pfizer that have made them appear even more shady. Not to mention Pfizers multiple billion dollar lawsuits/fines in the past. I don't blame some people for being skeptical, nor do I blame them for feeling like they are forced to get something they aren't sure they can trust.
It's hard to just trust an organization that has already done multiple things in the past to make you not want to trust them.
The cases that feel even worse for me are the people who have had previous doses and are coming in for 2nd doses or boosters but have had previous unexplained side effects shortly after the doses. Like side effects that are beyond the "normal" ones. Many of these people have visited hospitals or their family doctors, had multiple tests, and get told that nothing is wrong, or that they are not sure what is wrong. And these kind of cases are often not counted an "adverse effect". I alone have had many people tell me these things. They often again feel forced to get the next dose because of pressure from their employer or government. And it just feels bad giving them the vaccine, because they don't sound anti-vaxx, they sound like they legitimately had a severe reaction to the vaccine. But often doctors and public health agencies will brush these incidents off and pretend like it's not because of the vaccine. They are dismissed and considered an anti-vaxxer making things up. And this really sucks. This is not the way medicine should work.