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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

#191

Post by breck »

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…

> 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.

I see this position put out there a lot and generally go unchallenged. For the record some people think the opposite: that it was unethical to unblind the placebo group so early. At the time you could estimate that continuing the placebo group might lead to ~60 unnecessary deaths from Covid-19 and a few hundred more serious cases. That is in the lucky scenario where the early success held. But in all scenarios, in return for a few dozen volunteers risking their lives, billions of people would benefit from randomized, placebo-controlled trial data which the NIH itself calls the "gold standard" as to "whether or not a treatment is safe and effective".

IMO the harms we have gone through from flying in the dark (people underhyping/overhyping the vaccines), multiplied by the number of people involved, make this a case where unblinding was unethical. It is very easy to imagine that far more life was lost in the general population from being in the dark than was saved by unblinding the volunteer study population.

(There's also the issue of whether or not it would have been practical to keep the participants blinded. I think that's a challenging topic of its own orthogonal to the ethical question.)

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

#192

Post by kevin_b_er »

choward wrote: post #21
ceejayoz wrote: post #4

https://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…

When they're known for spreading lies about communicable diseases, why shouldn't there be suspicion?

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

#193

Post by rvnx »

ModernMech wrote: post #120
cogman10 wrote: post #100

Earlier quoted context omitted.

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…

> I don't use drugs or have a history of metal disorders. Very happy for you, but if you did, you might have learned by now that people (and employers) can treat you very differently after they find out you're an addict or have a mental disorder, and it's best not to telegraph that information to everyone except close friends you can trust.

Don't they ask in the US when you apply for a job if you have any significant disability / disease ? I remember seeing that in many of the job application forms (which I find strange actually).

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

#194

Post by ceejayoz »

rvnx wrote: post #188
throwawaygh wrote: post #134

Earlier quoted context omitted.

Why don't you include a step where you ask patients if they're ok with their medical history being put in a public s3 bucket ? I'm fully supportive of the right to pseudonymous speech, but it strikes me that you are in an awfully awkward position of speaking anonymously while demanding that you should have access a trove of patient history without signing any sort of data use agreement and without even the most basic…

Ok, why not, this is what I propose: Asking the user: "This record is going to be shared publicly, do you agree to share this information (without revealing your name and address) ? > [...] This information can help researchers, doctors and people interested into science to discover new information about drugs and diseases interaction."

Cool. Now you’ve got a whopping pile of selection bias added to the dataset.

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

#195

Post by [deleted] »

rvnx wrote: post #186
bshipp wrote: post #148

Earlier quoted context omitted.

Anonymizing datasets is time consuming and would take resources away from the FDA to implement, instead of doing it themselves. I have no doubt people want to help but the only way they really could would be to sign a contract with someone who is allowed to share that data internally, and operate in a embargoed situation (such as on-premise) under an NDA. Otherwise it's sort of like my 10-year-old wanting to help me…

I think Pfizer got 50B+ USD in revenue in 2021, maybe they can find a little bit of change somewhere to hire specialists to prepare the data cleanly and release it ?

[deleted]

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

#196

Post by srcreigh »

epgui wrote: post #173
srcreigh wrote: post #31

Earlier 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 biochemist, and I'm as pro-vaccine as they come. The BMJ is a highly reputable journal. It's unfortunate that the anti-vaxx idiots are misinterpreting or decontextualizing their content, but that's the anti-vaxx's fault and it's what they've always done.

Would it be so hard to state the limitations of their investigation, and clearly explain that a few key misconceptions are incorrect?

Based on their original censored article, it seems like they're heavily invested to make things seem problematic, and carefully avoid any indication that the status quo is acceptable. I don't think it's purely misinterpretation when anti vax people become generally skeptical of govt and pharma corps.

Like could they not just say the vaccine is safe in these articles based on other evidence? They care about people being able to share their posts to Facebook, I can't understand why they aren't trying even a little to reduce the possibility for public misinterpretation.

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

#197

Post by aakresearch »

choward wrote: post #102
AnimalMuppet wrote: post #78

Earlier quoted context omitted.

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 fo…

I am for privacy and against mandates. Especially against mandates as currently implemented. I just think that it is not overly hypocritical to take a pro-privacy and pro-mandate position at the same. These positions can co-exist. See https://news.ycombinator.com/item?id=29401254.

Mandate does not need to include public display of compliance at irrelevant points. The current implementation seems to be driven by assumption that many could be shamed into compliance. I believe it is very misguided policy, which works in a completely opposite way with people it aimed upon. Also, believe it or not, many people technically compliant are at the same time pretty disgusted with the privacy-breaking aspect.

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

#198

Post by wombatpm »

nextos wrote: post #189
throwawaygh wrote: post #163

Earlier quoted context omitted.

> This is already a solved problem... raw data is made accessible only through an ethics committee. Summary counts from transcriptomes are publicly available, though. Right. 1. I'm not sure you understand the extreme position being taken by rvnx in this thread. 2. Presumably the patients agreed that their transcriptome data could be shared in this way, and you didn't change your data handling post-facto without their…

Of course patients need to agree. It's actually even simpler. When you recruit patients into a study they sign an agreement that is broad and usually includes data sharing terms. Properly anonymized, of course. Said agreements have previously gone through ethics committees which tend to be extremely strict. They are rarely changed afterwards, since this requires agreement of patients, which is impractical to obtain i…

A broad agreement will most likely NOT make it past the institution review board. Any experiment with human subjects has strict rules around consent and data sharing agreements. The legal exposure is huge.

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

#199

Post by stakkur »

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…

PHI is not the ‘raw data’ they’re referring to, and you know it.

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

#200

Post by rvnx »

ceejayoz wrote: post #194
rvnx wrote: post #188

Earlier quoted context omitted.

Ok, why not, this is what I propose: Asking the user: "This record is going to be shared publicly, do you agree to share this information (without revealing your name and address) ? > [...] This information can help researchers, doctors and people interested into science to discover new information about drugs and diseases interaction."

Cool. Now you’ve got a whopping pile of selection bias added to the dataset.

Yeah, useful selectors for researchers, and still no identity.

We learnt that somewhere there is a man/woman that is depressed and has weight management issue.

We can take policy actions in order to improve the situation and monitor how this affects life of people (e.g. how much antidepressants are used in a year, are the food policies effective, what conditions are often linked to sudden cardiac arrest, etc).

And "Rebecca", nobody knows it's her, except herself, and those to whom she decide to publicly disclose her conditions (e.g. on social networks or to specialists).

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