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I believe patients have a right to privacy that deserves careful protection.
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Covid-19 vaccines and treatments: we must have raw data, now
51–60 of 257 posts
Re: Covid-19 vaccines and treatments: we must have raw data, now
#52Earlier quoted context omitted.
> Also, how can Pfizer claim that their "study" ends in 2023? Because it does. https://beta.clinicaltrials.gov/study/NCT04848584 > Several hundred million people have already received their vaccine, unaware that it's part of a study Because it's not. Use under the EUA and subsequent approval is separate from and in parallel with continuing studies.
> Because it's not That is misleading at best. It absolutely is part of an ongoing clinical trial regardless us if it is authorized for emergency use. How many people who were given the vaccine were told that it is part of an ongoing clinical trial, authorized for emergency use, and the data from the trial won’t be available for years? I suspect a very small percent.
My kids were in a clinical trial on bilirubin lights, a technology around since the 1950s. Would it be fair to imply the lights are untested as a result?
Re: Covid-19 vaccines and treatments: we must have raw data, now
#53https://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…
Many of the accusations in this allegedly science-based article are purely guilt by association. In many cases there's no association at all, just fringe people referencing Doshi's peer-reviewed publications. If Hitler was against cigarettes, does that mean I should smoke? I can literally not find two consecutive sentences in this entire article without a snarky ad hominem or tribal flag-wave.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#54At 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…
I'm not fully up to speed with all the research here, but as far as I understand it's quite easy to de-anonymize many datasets of exactly the kind you describe. If you're not really, really careful there will be lots of information in simple demographic data that could easily be matched to other data sources.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#55>The BMJ supports vaccination policies based on sound evidence. As the global vaccine rollout continues, it cannot be justifiable or in the best interests of patients and the public that we are left to just trust “in the system,” with the distant hope that the underlying data may become available for independent scrutiny at some point in the future. The same applies to treatments for covid-19. Transparency is the key…
Everythihng can be declared a matter of national security...
Yes, and there have been bad actors in the government who do that to try and avoid accountability. Hopefully they usually get overruled by someone with good sense in the executive branch. But if not, the judicial branch could overrule an invalid classification and order it be made public.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#56The BMJ seems to be on good form. First publishing the whistle blower account of pfizer [1], and now this call for raw vaccine trial data. I commend them on this approach, and can only hope that the vaccines are as safe and effective as we have been told. [1] https://www.bmj.com/content/375/bmj.n2635 - "Covid-19: Researcher blows the whistle on data integrity issues in Pfizer’s vaccine trial"
I can only recommend this article about bmj: https://respectfulinsolence.com/2021/11/15/wtf-happened-to-t...
I cannot recommend that article. Science exists in a realm of science, just because a major medical organisation is misunderstood dosen't make them 'antivaxxers'. BMJ is asking for open data, something I think many people here could utilise and find value in.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#57Earlier 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…
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Re: Covid-19 vaccines and treatments: we must have raw data, now
#58Re: Covid-19 vaccines and treatments: we must have raw data, now
#59I’m a software consultant for Pharma companies and have worked on projects that used the same kind of study design as the Pfizer COVID vaccine (Kaplan-Meier).
“Raw data” is submitted to the FDA in the CDISC format. This format contains a lot of pretty sensitive medical information, including which diseases a patient has, their medical history, what drugs they take, etc. This is supposed to be anonymized, but if the public were to be able to get this info, I strongly believe there is enough information to re-identify patients. And it’s not as simple as just removing the sensitive medical data because the primary or secondary analyses may be dependent on them.
Re: Covid-19 vaccines and treatments: we must have raw data, now
#60Earlier quoted context omitted.
> Do you disagree with anything in the article? Absolutely, yes. I believe there to be an acute public health interest in not letting antivax nuts run wild on raw data like they do with VAERS, despite clear disclaimers not to do so. Additionally, as a participant in a couple of trials, I see a significant benefit to careful review before the release of data that might inadvertently reveal my identity, conditions, med…
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There's no point in aiding someone whose interest lies in flinging monkey poo instead of actually having a good-faith debate.