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Do no harm petition: Don't give big tech access to our medical records

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Re: Do no harm petition: Don't give big tech access to our medical records

#121

Post by kgwxd »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

"but the upside is just so much larger than the harms"

Without the privacy, the world would be a different place and the people in power in that world would have no interest in advancing anything that doesn't directly give themselves more power. There would be no well funded scientist outside of the military.

Re: Do no harm petition: Don't give big tech access to our medical records

#122

Post by JohnFen »

manicennui wrote: post #42
iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Right after we make all medical treatments not-for-profit and all medical research completely open.

Now that would change the equation quite a lot!

Re: Do no harm petition: Don't give big tech access to our medical records

#123

Post by Nifty3929 »

hideo wrote: post #103
Nifty3929 wrote: post #84

Earlier quoted context omitted.

Limited Liability is a GREAT thing. It allows us to build businesses that serve society that we wouldn't otherwise. Would you start a company or invest in one if you could lose all your personal wealth? Few would.

You're missing GPs point. GP is not arguing to remove the concept of LLCs. GP is arguing that the entity in charge of all your medical information should not be an LLC. LLCs in general are great. This company probably shouldn't be LLC.

If their lability was not limited, the company would not have been started.

Re: Do no harm petition: Don't give big tech access to our medical records

#125

Post by LatteLazy »

scythe wrote: post #91
LatteLazy wrote: post #40

Earlier quoted context omitted.

You cannot really anonymised records like these. You can identify most people from only their post code, gender and date of birth (using just public data sources). So stripping names out is meaningless...

You're really underestimating the depth of anonymization in medicine. Birth dates are considered PII. Treatment dates are PII. Record numbers are PII. Locations "narrower than a state" are PII. Even ages over 85ish are PII because there tend to be very few people that old at a particular facility.

I mean, you can always anonymise data by removing all the useful data.

And that is the problem here: how do you remove enough data to make it NOT personally identifiable (or close too) AND not remove so much data that the whole thing is pretty useless.

No one has really managed that yet. People who have not tried assume it is possible. But it probably isn't except maybe in very specific cases where you only need very limited data and don't care about correlations with other factors...

There are some quite high profile examples of orgs releasing anonymised data and people linking it back to the individuals:

https://www.theguardian.com/technology/2019/jul/23/anonymise...

Interestingly the UK (I am a limey brit) actually has some really good experience with this, both from NHS medical records and public studies on Civil Servants...

https://en.wikipedia.org/wiki/Whitehall_Study

Re: Do no harm petition: Don't give big tech access to our medical records

#126

Post by nmca »

Nifty3929 wrote: post #94

The effort we spend protecting medical records is out of all proportion to the damage done by any leaks. I really do not understand the reasoning. And this is effort that would otherwise be used to generate other economic benefits, like food, housing, medical treatments, etc. Another problem is that these laws (HIPAA, etc) actually CONTRIBUTE TO the leaks, because they provide a huge blackmail incentive to hackers. T…

Some folks would be materially harmed by medical record release; e.g. women who have had abortions in states where it is illegal, gays in very conservative areas, passing trans people, the functional severely depressed, passing folks with autism etc

Re: Do no harm petition: Don't give big tech access to our medical records

#127

Post by _piif »

JohnFen wrote: post #41
TZubiri wrote: post #5

Who gives a shit if Google has your medical records?

I do. I give a shit about any data any tech company has about me, and a thousands times more shits when it's very sensitive data such as medical records.

The fact that we have normalized that behavior to the point of having to explain the concept of not wanting to give out data like candy is so wild to me

Re: Do no harm petition: Don't give big tech access to our medical records

#128

Post by JohnFen »

arp242 wrote: post #88
iandanforth wrote: post #61

Earlier quoted context omitted.

I reject the framing. It's about responsibility vs selfishness and fear. Medical information is a byproduct of something you do anyway that can save lives . It is our responsibility to make it available. If you want to opt out, fine, but basic decency demands that as a society we get over our collective hangups and make this information available.

I don't mind aggregate data, or anonymized where I'm "Patient b15-2gty", which is what you seem to be talking about, but I do mind "here's all the data about patient Martin Tournoij, for everyone to read". I wouldn't want any future employers to see my medical data for example, as they may use this to discriminate (theoretically anyway; my medical history thus far is essentially non-existent). Also: in the late 90s m…

> I don't mind aggregate anonymized data where I'm "Patient b15-2gty

If you're ""Patient b15-2gty", then the data isn't aggregate. Aggregated data means that there are no individual data points at all, only aggregated ones, so there is no need for any sort of individual identifiers.

If there's any sort of individual identifier, then the data cannot be effective anonymized. If the data is aggregated, and the original records that were included in the aggregate figures is deleted, then I think that's adequately anonymized and I would have no problem with it.

Short of that, though, "anonymization" is a thing that doesn't actually exist.

Re: Do no harm petition: Don't give big tech access to our medical records

#129

Post by nmca »

photochemsyn wrote: post #38

People are saying that open access to everyone's medical records would speed up research, but that's not how well-controlled and well-designed medical research works in practice. For example, if you wanted to study lung cancer causes and treatment efficacy, just mining public data would not be that beneficial. Real studies need controls, detailed patient histories, actual observational lab work (blood tests, etc.), a…

This plainly isn't true, just to briefly articulate:

* Hypothesis generation sped up

* Candidate participant discovery sped up - including finding controls

* large classes of analysis possible on just the data, including difference in difference and natural experiment

Re: Do no harm petition: Don't give big tech access to our medical records

#130

Post by chopin »

cm2012 wrote: post #57
w0m wrote: post #53

I honestly think the the taboo-nature of medical records kills people in significant numbers. More-so than anything else, the focus should be on preventing pre-existing conditions from being able to affect individuals negatively than adding hoops for the individual to access their own gated personal records (Moving between hospital systems today can be an absolute nightmare in the states).

100%. HIPPA is the reason doctors offices still use fax machines and refuse to update patients with emails.

I consider that a good thing.
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