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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

#101

Post by ummonk »

fabian2k wrote: post #91
nsainsbury wrote: post #82

Earlier quoted context omitted.

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 a…

But we actually don't need the VAERS data to examine if the vaccines are better than the alternative. We do need it to provide accurate labels for side effects, but that is all. We can simply look at infection, hospitalization and death in vaccinated and unvaccinated populations. If we properly match the populations, we can determine if the vaccine saves lives, and it turns out that they do save a lot of lives.

"If we properly match the populations," - that's a big if though. Without any matching, vaccines appear to have negative value because older people are more likely to get vaccinated, but even controlling for age there are a variety of potential confounding variables like general health, risk-avoidance, etc.

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

#102

Post by choward »

AnimalMuppet wrote: post #78
choward wrote: post #51

Earlier quoted context omitted.

Quoted post unavailable.

We started down this thread with you asking people to argue with the points of the article, not with who the author was. 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.

How are the questions loaded? They are relevant in making my point. In order to have debate you need information. If there's no transparency debate becomes pointless. The debate just comes from to who you trust and not real data.

ceejayoz said they're pro medical privacy but thinks that people should have to let people know if they're vaccinated. It makes no sense.

They also want people to be fired from their jobs for not taking a vaccine whose data isn't being released.

In summary I find it hypocritical to be against vaccine transparency but for mandates. It's also hypocritical to be for medical privacy but be for vaccine mandates.

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

#103

Post by lurquer »

fabian2k wrote: post #44
diroussel wrote: post #36

Earlier quoted context omitted.

It's hard to analyse the data from treatments, as treatments don't have a control group. Trials are designed with control groups, placebos and double-blind process to gather data and then analyse it. We may have loads of data from real people being treated, but good luck trying to analyse it in a scientific way. We need effective vaccines, and we need to be able to trust them. Just treating people with a vaccine does…

It's much, much harder to understand the data if you don't have a control group. But once you have an effective treatment, you no longer have a control group if you're at all ethical. You cannot keep a working treatment from people just to do more science, that is deeply and fundamentally unethical. So the moment we knew the vaccines worked, the science got harder. Well, that point also save an enormous amount of liv…

> But once you have an effective treatment, you no longer have a control group if you're at all ethical. You cannot keep a working treatment from people just to do more science, that is deeply and fundamentally unethical.

You could easily find millions of potential study participants who don’t want the vaccine. The study wouldn’t be double-blind, but it would be single-blind and better than what they chose to do.

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

#104

Post by throwawaygh »

rvnx wrote: post #97
jjulius wrote: post #88

Earlier quoted context omitted.

>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-identify based on what ? There are no databases that you can link against if you strip out the major identifiers (like city and date of birth). It's for the benefit of patients, and this raw data is already available, but under a loose NDA for commercial partners and researchers...

> Re-identify based on what ?

The fact that you poo-poo this question is telling. Preventing re-identification attacks is incredibly subtle and sometimes impossible. Removing "city and date of birth" is nowhere near sufficient.

> this raw data is already available, but under a loose NDA for commercial partners and researchers...

Yes. It's available to people who have their real identities tied to their access and can be sued into oblivion or possibly even prosecuted for wanton misuse of the data. Surely you see how this is different from throwing it on a public s3 bucket, right?

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

#105

Post by bigfudge »

planetsprite wrote: post #38
cyanydeez wrote: post #28

Earlier quoted context omitted.

this stuff just smacks of iignorance and attempts to continue tompoliticize clear public health concerns. i am sure there will be a red herring in all the data that will cash a small enough shadow. but this jibbering is about dragging science down to the level of far right ignorance, which is the onlymplace concervatives can win.

Speculation is made either way without datapoints. What's the harm in being transparent if at worst some spurious (but provably spurious) correlations mislead a few people already prone to mistrust? Higher transparency would also dissolve a lot of the claims that the pharmaceutical companies are "hiding" something regarding the actual effectiveness of their vaccines and therapeutics.

I don’t think people claiming pharma companies are going to be satisfied by data dumps. They will simply claim the data are fabricated.

There is so little correspondence between reality and claims already- I think you’re making the mistake that the discourse is in good faith. It doesn’t seem to be to me.

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

#106

Post by YarickR2 »

cogman10 wrote: post #85
gpm wrote: post #61

Earlier quoted context omitted.

> 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 Fundam…

six week old pregnancy terminated while her official partner is on tree month long business trip. instant divorce.

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

#107

Post by rvnx »

throwawaygh wrote: post #94
rvnx wrote: post #86

Earlier quoted context omitted.

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

What is your full name and address? Age? Weight? Height? Eye color? Blood pressure? What STDs do you have, if any? How often and how much do you drink? Smoke? Any history of drug use? Mental disorders? What about your family? Where is the bad thing in you posting this information here right now? Actually, that's not even analogous. A better analogy would be you post all this info under a pseudonym -- e.g., "rvnx" or…

It looks like you are trying to drift the intent and scope of the dataset disclosure.

For example, having the list of symptoms, medications and even (just an imaginary example) pulmonary X-Ray or also on the chest having an open dataset of MRI pictures with the age of the patient, history of diseases would considerably help and there is no way you can link it back unless you know the history of the patient already (but then, what's the issue; none because you already know the information).

Plus if you ask the person about it, I really don't see the problem :|

Yes in theory, there is a possibility that someone has a database somewhere of all the boobs spacing, and can determine approximate lungs size, try to guess what could be the likely owner of a lung picture, etc etc, all of that for what ?

The person who is going to benefit from it, is clearly the COVID-19 researchers, and the end-patient.

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

#108

Post by jjulius »

rvnx wrote: post #97
jjulius wrote: post #88

Earlier quoted context omitted.

>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-identify based on what ? There are no databases that you can link against if you strip out the major identifiers (like city and date of birth). It's for the benefit of patients, and this raw data is already available, but under a loose NDA for commercial partners and researchers...

I'm not so sure that you should be so sure that there are no databases that such data can be referenced against. Regarding stripping out major identifiers, please note that OP commented that "it's not as simple as just removing the sensitive medical data because the primary or secondary analyses may be dependent on them".

And of course raw data like this could benefit patients, but keeping access to raw data limited also benefits patients. Sure, the data is readily available under a loose NDA, but it's available to people who have explicit knowledge of the requirements around handling sensitive, identifiable data. Average Joe's and Jane's do not have this knowledge, and bad actors just plain don't give a shit.

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

#110

Post by jjulius »

cogman10 wrote: post #100
throwawaygh wrote: post #94

Earlier quoted context omitted.

What is your full name and address? Age? Weight? Height? Eye color? Blood pressure? What STDs do you have, if any? How often and how much do you drink? Smoke? Any history of drug use? Mental disorders? What about your family? Where is the bad thing in you posting this information here right now? Actually, that's not even analogous. A better analogy would be you post all this info under a pseudonym -- e.g., "rvnx" or…

I'm 36, I weigh 190 lbs, I'm 6'1. My eyes are green. Blood pressure 120/80 (last I checked). No STDs. I drink once a week about 3 servings. I don't smoke. I don't use drugs or have a history of mental disorders. Depression runs in my family. I only really hesitate to post full name and address but, frankly, I'm sure given my user handle it wouldn't be terribly hard for someone to find both of those. So tell me, what…

>So tell me, what harm have I done to myself by sharing this information?

You're comfortable sharing it, that's cool! Is your neighbor? Your friend? Your cousin? Should they be obligated to divulge their own medical information just because you're fine divulging yours?

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