Covid-19 vaccines and treatments: we must have raw data, now • Hacker News Board

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

#121

Post by ashtonkem » Thu, Jan 20, 2022, 11:08 PM UTC

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 mean, it’s not like anonymous datasets haven’t been de-anonymized before[0]. Successfully anonymizing data sets is a hard and subtle process, and it’s way harder than just removing major identifiers like city and birth date. For example age is obviously super important for vaccine and disease studies, and providing an age narrows down someone’s birthdate significantly.

And no, this isn’t under a “loose” NDA. This would be covered by HIPAA, which tends to be un-subtle about violations.

0 - https://www.cs.princeton.edu/~arvindn/publications/de-anonym...

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

#122

Post by cogman10 » Thu, Jan 20, 2022, 11:08 PM UTC

YarickR2 wrote: post #106

cogman10 wrote: post #85

Earlier quoted context omitted.

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.

Assuming name isn't attached to the data, that'd require the spouse (or someone else) to do the legwork to link up the medical history.

When I say re-evaluate HIPAA, I don't mean "Hey, let's put everyone's name right next to every checkup and list it in a wikipedia like DB and email relatives about the results of every checkup". I mean "Hey, let's consider limiting the scope of the law and the penalties associated with it". It doesn't have to be a black and white thing.

That all seems like a worthy risk if it enables researchers to find that "Hey, looks like people prescribed medication X with medication Y tend to develop cancer Z way more frequently than the general public" or "Hey, looks like people with gene X respond way better to cancer treatment Y than the general public".

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

#123

Post by ceejayoz » Thu, Jan 20, 2022, 11:08 PM UTC

choward wrote: post #109

ceejayoz wrote: post #58

Earlier quoted context omitted.

That describes a wide variety of proposals. I unequivocally support it for healthcare workers.

Quoted post unavailable.

As a patient, I’d hope my healthcare worker is interested in both my privacy and not giving me communicable diseases.

Most real world scenarios involve rights that may conflict at times, like the right to free speech running into libel. As a society, we wind up having to decide how to resolve those conflicts.

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

#124

Post by jjulius » Thu, Jan 20, 2022, 11:09 PM UTC

rvnx wrote: post #115

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…

In practice, the person can be bucketed in an age, height and weight group and then the problem is solved and there is a constructive dataset. Address and name are not necessary. - Person 30-35, living in California, has history of obesity, suffers from type II diabetes, under treatment of med A, and med B. - first dose: Jan 2021 - second dose: March 2021 Medical outcome: ZZZ

I'm genuinely curious - OP has commented about their direct work with pharmaceutical companies on datasets like what we're discussing. Do you have any history of direct work with similar/same datasets yourself?

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

#125

Post by SomewhatLikely » Thu, Jan 20, 2022, 11:09 PM UTC

mike_d wrote: post #63

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…

Depending on the phase of clinical trials, they don't need to be double blind or controlled. You can absolutely analyze real world mass vaccination data in a scientific way. Just treat pre-vaccination and post-vaccination as two different patients. The numbers are so large that other factors (environmental, genetics, etc) cancel out. So if your post-vaccination population has a rate of heart attacks 80% lower than th…

Different prevalences of variants over time and different rates of infection over time would complicate such a time-based control.

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

#126

Post by jeromegv » Thu, Jan 20, 2022, 11:11 PM UTC

nsainsbury wrote: post #98

fabian2k wrote: post #91

Earlier quoted context omitted.

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.

That's true. And I agree that the vaccines have saved lives - mostly, of the old and the very sick/unhealthy. However, what is less clear today is whether there has been a net positive or negative effect of the vaccine for young healthy people. You can only come to that conclusion if you actually had high quality data and studies on vaccine side-effects, effectiveness in population groups stratified by age, health, e…

Why do you mix mandates and lockdowns in there? What does it have to do with the vaccine?

If you bring lockdowns into the picture, you have to compare to what would have happened WITHOUT a lockdown as well, how many more deaths in hospitals, etc. The countries that tried this strategy have a very high excess death to compared to those that tried to limit human contacts (especially PRE vaccine).

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

#127

Post by incrudible » Thu, Jan 20, 2022, 11:11 PM UTC

fabian2k wrote: post #96

incrudible wrote: post #81

Earlier quoted context omitted.

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?

Please show the data that claims that double vaccinated are more likely to be infected than unvaccinated people by Omicron. And raw infection counts are not an answer here as the vaccinated and unvaccinated people are clearly not matched populations you can compare without adjustments.

> And raw infection counts are not an answer here as the vaccinated and unvaccinated people are clearly not matched populations you can compare...

That's the point! That's why we need controlled trials. With an unvaccinated group. You know, the thing that you say we can't have, because it's unethical.

> ...without adjustments.

As usual, there's an XKCD for that:

https://xkcd.com/2560/

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

#128

Post by rvnx » Thu, Jan 20, 2022, 11:11 PM UTC

throwawaygh wrote: post #104

rvnx wrote: post #97

Earlier quoted context omitted.

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…

It looks like from what you are saying that it's an incommensurable effort to anonymize reasonably the dataset (the majority of the risks can be hedge by bucketing, and then there can be subtle deanonymization edge cases but they don't scale).

It reminds me the FDA saying they can't release the COVID-19 documents because reviewing 44'000 documents would take 50 years.

It didn't take 50 years to produce them...

Yes there is some effort needed to anonymize reasonably the data but it's not an impossible task. It's a question of motivation.

Here, clearly, the labs and administration don't really want to put efforts into that.

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

#129

Post by throwaway09223 » Thu, Jan 20, 2022, 11:12 PM UTC

rvnx wrote: post #107

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…

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 (b…

There's no drift, OP stated this clearly in the original post when he wrote: "I strongly believe there is enough information to re-identify patients"

If you were to have access to my MRIs you could almost certainly identify me based on physical characteristics which can be seen in my MRI data which would correlate with data found on social media where I've sometimes generally discussed my medical conditions without going into specifics. There are MRIs for conditions I haven't discussed, in addition to the identifying ones I have.

There are a lot of people with fairly unique medical conditions and body situations (eg: missing a limb, surgical implants). The gap between "I got hurt in this way" and "here's the MRI scans of my body in detail along with other lab notes and other unrelated and possibly extremely embarrassing conditions" is huge

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

#130

Post by jeromegv » Thu, Jan 20, 2022, 11:12 PM UTC

fabian2k wrote: post #111

nsainsbury wrote: post #98

Earlier quoted context omitted.

That's true. And I agree that the vaccines have saved lives - mostly, of the old and the very sick/unhealthy. However, what is less clear today is whether there has been a net positive or negative effect of the vaccine for young healthy people. You can only come to that conclusion if you actually had high quality data and studies on vaccine side-effects, effectiveness in population groups stratified by age, health, e…

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.