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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

#151

Post by mandmandam »

jeromegv wrote: post #130
fabian2k wrote: post #111

Earlier quoted context omitted.

We have high-quality data on the vaccines and their side effects. We don't have RCTs with billions of people, but that is data we never had for anything and can't reasonably get. Judging the risk/benefit ratio is the primary purpose of the regulatory agencies that approve vaccines. I don't see any reason to believe the claim that the vaccines are harmful for everyone below 50, that sounds quite outrageous to me. Ther…

Exactly. They DID make adjustments to not give Moderna/AstraZeneca to younger people because they had the side effect data and compared it to the risk of getting COVID and realized that Pfizer was probably better at mitigating those risks Another clear case of someone implying totally crazy things (younger folks without the vaccine would have been better without the vaccine) with absolutely NOTHING to support it.

.. If only we had clear data to make such a decision.

However, collecting and analyzing that data would likely have eaten a percent or two into the eighty billion dollars Pfizer made last year, so I guess there's nothing we can do but trust the same authorities that brought us 'natural origin for sure', 'masks don't work', 'NNVTs don't mean anything any more', and 'Covid isn't airborne'.

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

#152

Post by aeternum »

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…

Exact dates and exact hospitals should also not be included. Doctors do not manually write their hospital location and the date in each of their notes (instead these are fields added by software like Epic) so this should be easy to just not export those fields.

There will also be some risk that someone has a very unique combination of visits or treatments that does make them identifiable but that should be an incredibly low percentage and we need to weigh the pros/cons. I can also get a good idea of who has cancer by sitting on a bench outside a cancer center and watching who goes in.

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

#154

Post by throwawaygh »

rvnx wrote: post #149
throwawaygh wrote: post #146

Earlier quoted context omitted.

Notice that this is a policy document outlining a process, and that one outcome of following that process can be not sharing the data ! It's not as simple as "follow these rules and you can share the data". It can also be "follow these rules, which tell you not to share the data". It's also possible to reach an outcome that the data can be shared but must be de-identified in a way that precludes important statistical…

The thing is; in practice, how can you re-id someone that has a very rare medical condition if you don't already know that the person has this very rare medical condition ?

"this person is certainly my biology teacher, who shared the fact that she had a rare genetic disorder during our Genetics unit as well as . She has herpes. Or also she has an alcohol problem and used to do acid." Teacher is now fired.

You also keep ignoring the issue of consent. Step one is to ask patients.

Or the person shared their story on the public website of a "Run For The Cure" style website about that genetic disorder.

Or so on.

"Sparse Features" aren't always a thing that the person wants to keep private.

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

#155

Post by mandmandam »

lurquer wrote: post #103
fabian2k wrote: post #44

Earlier quoted context omitted.

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.

It's astounding how rare this rather obvious course of action has been in the global conversation.

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

#156

Post by invokestatic »

nradov wrote: post #141
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…

What is the specific basis for your belief that patient re-identification is possible? The federal government has provided clear guidance on de-identification which should eliminate that as a serious concern. https://www.hhs.gov/hipaa/for-professionals/privacy/special-...

Under the safe-harbor deidentification guide you posted, all dates must be removed except for the year. If this was done on a clinical trial dataset, the data would be useless. Specifically for the COVID vaccine trial, the “statistic” used is the number of days between when the patient enters the study and when they get COVID. This is called TTE or time-to-event and underpins the entire study design. You need the exact date the patient entered the study AND contracted COVID to calculate the TTE value. Without this information, you have no chance of validating the results of the study.

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

#157

Post by mchusma »

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…

I think the level of effort we make as a society on medical privacy is backwards. All health information should be public except in extreme circumstances. Right now, it's almost impossible to get datasets on health data. Imagine if 100% of everyone's data was digitized. The amount of health innovation, lives saved, cures found, is likely to be incredibly large. All the costs that go into trying to comply with HIPPA, could be gone.

I get that some people want to prevent the use of the data for discrimination...just legislate that then.

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

#158

Post by Tostino »

rvnx wrote: post #149
throwawaygh wrote: post #146

Earlier quoted context omitted.

Notice that this is a policy document outlining a process, and that one outcome of following that process can be not sharing the data ! It's not as simple as "follow these rules and you can share the data". It can also be "follow these rules, which tell you not to share the data". It's also possible to reach an outcome that the data can be shared but must be de-identified in a way that precludes important statistical…

The thing is; in practice, how can you re-id someone that has a very rare medical condition if you don't already know that the person has this very rare medical condition ?

It's that knowing that someone has a rare medical condition that someone willingly shared can be a signal to find out other things in their medical records that they may not have wanted to share with others they know.

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

#159

Post by TameAntelope »

choward wrote: post #40
ceejayoz wrote: post #32

Earlier 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…

Quoted post unavailable.

"Yes." is a full sentence, which I'd use here if it weren't so glib and frowned upon on HN.

Privacy matters, you don't just get to look at people's health data for free or without caveats and conditions, namely their consent.

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