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

#131

Post by cogman10 » Thu, Jan 20, 2022, 11:15 PM UTC

throwawaygh wrote: post #114

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…

> So tell me, what harm have I done to myself by sharing this information? None, and yet you still aren't willing to put your name behind the statement "I'm healthy as a fiddle and never use drugs except the occasional beer". Also -- and this will apparently come as a surprise to you -- people who have STDs, abuse drugs/alcohol, or have genetic disorders in their family don't necessarily want that info shared on the…

Frankly, putting up my name with my medical history has far less to do with having the two linked and far more to do with "I'd rather not have a future employer have an easy link to my social media information".

Oh genetic disorders, you didn't ask about that earlier. My family is a carrier for cystic fibrosis. Is that something that's supposed to be super terrible to share?

I'm not the GP, but frankly I think it's a little crazy how worried everyone is about being identified through round about methods in medical data. Google has a far better bead on exactly who I am than any doctor and, frankly, I'm far more worried about that advertising profile than I am about the "what if's" of my medical data being shared between hospitals and doctors (and potentially being leaked).

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

#132

Post by rvnx » Thu, Jan 20, 2022, 11:16 PM UTC

throwawaygh wrote: post #118

rvnx wrote: post #107

Earlier quoted context omitted.

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…

> It looks like you are trying to drift the intent and scope of the dataset disclosure. No. Intent doesn't matter. That's the whole point. To wit: there's a reason that reidentification attacks are called attacks ! No one intends to be hacked, and writing a program that you intend to be secure doesn't imply that the program is in fact secure. So too with anonymization. > having an open dataset of MRI pictures But we'…

Ok then next steps:

Plan A: - sit and do nothing "it's impossible to release any data, too bad, we'll never know!"

Plan B: - "we have a risk that a few % of ppl may be identified if we already know their medical history/details, it's impossible to release any data, too bad!"

Plan C: - "we remove the biggest identifiers to make sure the majority of the people cannot be reasonably identified, this is going to take a few days or weeks of work but will bring benefits to the overall population and transparency on the treatments"

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

#133

Post by jeromegv » Thu, Jan 20, 2022, 11:16 PM UTC

mberning wrote: post #24

It’s incredible how quickly pharmaceutical companies rehabbed their deservedly awful reputation by using the pandemic. Years from now, maybe decades, I’m sure we will find out there were very troubling results from the clinical trials that were swept under the rug.

You don't need to focus your conspiracy theory on clinical trials, there are billions of people who got the vaccine. Are you saying that every single of all those countries are part of a giant conspiracy that are hiding the impact of the vaccine under the rug?

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

#134

Post by throwawaygh » Thu, Jan 20, 2022, 11:17 PM UTC

rvnx wrote: post #132

throwawaygh wrote: post #118

Earlier quoted context omitted.

> It looks like you are trying to drift the intent and scope of the dataset disclosure. No. Intent doesn't matter. That's the whole point. To wit: there's a reason that reidentification attacks are called attacks ! No one intends to be hacked, and writing a program that you intend to be secure doesn't imply that the program is in fact secure. So too with anonymization. > having an open dataset of MRI pictures But we'…

Ok then next steps: Plan A: - sit and do nothing "it's impossible to release any data, too bad, we'll never know!" Plan B: - "we have a risk that a few % of ppl may be identified if we already know their medical history/details , it's impossible to release any data, too bad!" Plan C: - "we remove the biggest identifiers to make sure the majority of the people cannot be reasonably identified, this is going to take a f…

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 step of getting permission from the people whose patient history you insist on seeing.

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

#135

Post by notwhereyouare » Thu, Jan 20, 2022, 11:18 PM UTC

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…

didn't netflix have to stop their algorithm recommendation competition because people were starting to identify real people through the samples provided?

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

#136

Post by rvnx » Thu, Jan 20, 2022, 11:18 PM UTC

throwaway09223 wrote: post #129

rvnx wrote: post #107

Earlier quoted context omitted.

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 g…

Fair enough, what do you propose to give access to people who want to help ?

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

#137

Post by jjulius » Thu, Jan 20, 2022, 11:19 PM UTC

cogman10 wrote: post #131

throwawaygh wrote: post #114

Earlier quoted context omitted.

> So tell me, what harm have I done to myself by sharing this information? None, and yet you still aren't willing to put your name behind the statement "I'm healthy as a fiddle and never use drugs except the occasional beer". Also -- and this will apparently come as a surprise to you -- people who have STDs, abuse drugs/alcohol, or have genetic disorders in their family don't necessarily want that info shared on the…

Frankly, putting up my name with my medical history has far less to do with having the two linked and far more to do with "I'd rather not have a future employer have an easy link to my social media information". Oh genetic disorders, you didn't ask about that earlier. My family is a carrier for cystic fibrosis. Is that something that's supposed to be super terrible to share? I'm not the GP, but frankly I think it's a…

>... my name with my medical history...

>My family...

>... I'm far more worried about that advertising profile than I am about the "what if's" of my medical data...

Again - yours. It's great that you're fine with your data being public, but as is evidenced by the way certain posts in this comment chain are being down/upvoted, clearly many other people share the opposite view and would prefer their data remain private.

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

#138

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

notwhereyouare wrote: post #135

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…

didn't netflix have to stop their algorithm recommendation competition because people were starting to identify real people through the samples provided?

See also: the AOL search CD ROM set and many other releases where it turned out that anonymous data isn't.

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

#139

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

rvnx wrote: post #136

throwaway09223 wrote: post #129

Earlier quoted context omitted.

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 g…

Fair enough, what do you propose to give access to people who want to help ?

Go to work in the field.

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

#140

Post by throwawaygh » Thu, Jan 20, 2022, 11:21 PM UTC

rvnx wrote: post #136

throwaway09223 wrote: post #129

Earlier quoted context omitted.

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 g…

Fair enough, what do you propose to give access to people who want to help ?

A strict data use agreement signed by a real person with tangible assets and reputation at stake, outlining the acceptable and unacceptable uses of the data and well as appropriate data handling rules.

Until/unless patients agree otherwise.

I.e., the status quo.