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Covid-19 vaccines and treatments: we must have raw data, now

bmj.com

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Re: Covid-19 vaccines and treatments: we must have raw data, now

#81

Post by incrudible »

fabian2k wrote: post #67
incrudible wrote: post #65

Earlier quoted context omitted.

A lot of data now shows that double vaccinated are infected with Omikron more often than unvaccinated. I do not know what causes this or what it means, but imagine for a moment there were no unvaccinated left: Your vaccine could be arbitrarily harmful with a new variant and you would not be able to tell.

That is simply wrong. There is one study that listed negative effectiveness against Omicron for the vaccines. That study did not control for any confounding factors, it simply was not designed to measure this particular thing, it was focused on a different question. There are some strong fundamental reasons why we would not expect the vaccine to be harmful with future variants. And even then we would still be able to…

It is not one study, national data from Denmark, UK, Germany and Canada shows that double vaccinated are infected at a higher rate. I am not jumping to conclusions that this means efficacy is negative, because that would require a controlled trial with an unvaccinated group. Do you catch my drift?

Re: Covid-19 vaccines and treatments: we must have raw data, now

#82

Post by nsainsbury »

fabian2k wrote: post #14

At 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…

Actually, I would argue we don't have good data from the use of the vaccines. Part of the reason is because all the mechanisms used for reporting things like side-effects, effectiveness, etc. have a litany of confounding variables which haven't been controlled for which could be far better corrected for/isolated with good studies.

For example, when it comes to vaccine side-effects, I don't think there exists a true account for how common the side-effects really are. The most common way to report side-effects (VAERS, and similar national databases) are dismissed due to the self-reporting nature, local GPs frequently dismiss side-effects and tell people to just go home and take a Panadol with zero reporting going on (I had this happen to me - started experiencing severe chest pain 2 days post-Pfizer. Subsequently saw a cardiologist after months of pain and his comment to me was "I'm seeing young people like you daily and your cases are going widely underreported"), etc.

Likewise, when it comes to vaccine effectiveness, there are a million and one confounding variables from % of the population that already had natural immunity, covid variants, health, age, seasonality, societal lockdowns, isolation, etc.

Also, it's important I think for us to raise the bar to the highest possible standard when you're talking about a medical intervention that was forced under significant duress (loss of job, social stigma, public/medical shaming) on a substantial percentage of the world's population. We should not be content as a society to come within inches of worldwide medical authoritarianism without asking some seriously hard fucking questions and imposing the absolute strictest and highest possible scientific standards to justify why.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#83

Post by hanselot »

fabian2k wrote: post #23
brianmcc wrote: post #12

I remember writing the following about the AstraZeneca vaccine in Nov 2020 when concerns were raised with it. Two things can be both be true: - the vaccine is safe and effective - parts of approach in running studies weren't as good as they should have been Seems to perhaps apply here too.

Why not? Any mistake or design flaw in the trials reduces their value, it doesn't completely eliminate it. The mistake in the AZ trial is something I consider extremely embarassing and stupid (assuming the published information about it is correct). It's the kind of mistake nobody that actually works in a lab should make, and I really question the competency of the people involved here. But in the end this meant that…

No post body was provided.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#84

Post by ALittleLight »

ceejayoz wrote: post #32
choward wrote: post #21

Earlier quoted context omitted.

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…

> 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…

Ahh, trust in institutions through obscurity.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#85

Post by cogman10 »

gpm wrote: post #61
aeternum wrote: post #48

Earlier quoted context omitted.

> 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…

> 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 Because "patient name" isn't the only way a patient can be identified. "Male, 27, admitted to Sunnybrook hospital for stitches to his forehead due to knife wound on January 20th 2022" is almost certainly uniquely identifying (actually it's…

I think HIPAA is something we should be re-evaluating as a nation. Back in '96 it was certainly a good idea given how devastating things like an HIV diagnosis could be for a family member in a fundamentalist family. Or the impact of said diagnosis on insurance coverage.

With the ACA, the insurance coverage problem is gone. Pre-existing conditions can't be used as a reason to deny or change insurance rates.

The Fundamentalist problem exists, but seems like much less of an issue with LGBT acceptance being so much better now than it was in the 90s.

I just don't think that health information is so valuable that guarding it like a state secret is warranted. I'm ok with the notion of putting in basic safeguards like not attaching a patient name with the information but I don't see it has horrible if some system can infer absolute identity from that stuff.

After all, seems far more scary that my web browsing generates a far clearer picture of who I am than what you could glean from my medical records.

Having health information public and easy to gather would (potentially) be a significant boon to the study of health information. It would also make it a lot easier for us to make health information sharing systems so you don't have to fill out the same 500 forms every time you go to a different hospital or doctor.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#86

Post by rvnx »

invokestatic wrote: post #59

I’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 p…

And ? Where is the bad thing to open a dataset of comorbidities and related / suspected effect of vaccines / medications ?

Re: Covid-19 vaccines and treatments: we must have raw data, now

#87

Post by dang »

ProvesMyPoint wrote: post #57
dang wrote: post #37

Earlier quoted context omitted.

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…

Quoted post unavailable.

How do you know I don't 100% agree with you? The comment is just as much against the site guidelines either way.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#88

Post by jjulius »

rvnx wrote: post #86
invokestatic wrote: post #59

I’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 p…

And ? Where is the bad thing to open a dataset of comorbidities and related / suspected effect of vaccines / medications ?

>And ?

What's not to get? OP said:

>... I strongly believe there is enough information to re-identify patients.

Their concern is that just dumping raw data like this into the public would be a massive violation of privacy for countless individuals.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#89

Post by AnimalMuppet »

tomohawk wrote: post #2

> After a freedom of information request to the agency for Pfizer’s vaccine data, the FDA offered to release 500 pages a month, a process that would take decades to complete 75 years, actually. I don't mind trusting what someone says, but I need to be able to verify it.

Yeah, that was absolutely ridiculous. What are they doing, evaluating it pixel by pixel? That's 25 pages a day (20 working days a month), or 3 pages an hour (8 hour day). Does it really take 20 minutes per page to prepare the data for release? Do they really only have one person they can put on the task?

They deserved to have that both mocked and slapped down. It was an insult to both our intelligence and our right to know the truth about what they want us to take.

Re: Covid-19 vaccines and treatments: we must have raw data, now

#90

Post by kklisura »

daenz wrote: post #11

>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…

You know what else could undermine public trust in institutions? Classifying this data as a matter of national security.
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