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Google whistleblower: the medical data of millions of Americans is at risk

theguardian.com

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Re: Google whistleblower: the medical data of millions of Americans is at risk

#41
post #38
post #25

Earlier quoted context omitted.

One reading of this is that it's a cross-departmental collaboration, rather than just a single division.

That's the difference everyone here is talking about though. Normally in the healthcare industry, you engage a cloud provider, and it's "you store this data for us." Full Stop. You don't look at it. You don't analyze it. You don't share it. You don't touch it. It's our data, not yours. If what you're saying is true, Ascension, for some reason, has a deal with its cloud provider that allows Google to search through, a…

That's a very naive view of what happens. It's exactly how things are done, except that it's a one-stop shop.

The reality is that there is a fig leaf of privacy. HIPPA protects you from the office staff gossiping about your medical conditions. When you are admitted to the hospital, your prescriptions are sent to data aggregators in near real-time, your claims are sent to your insurer and subrogation in near real-time, etc.

Each one of these downstream providers perform their own analysis on the data. The prescription data is sold to pharmaceutical companies and wholesalers to provide KPIs for the sales organization. The insurance and subrogation people sell de-personalized data to marketing companies. The marketing companies can trivially figure out who most people are.

The end result is that you can easily get a list of every person in a zipcode who is pregnant (with estimated due date), has diabetes, had a stroke, etc.

Re: Google whistleblower: the medical data of millions of Americans is at risk

#42
post #6

I work for a large US based corp that focuses on technology and data services for the healthcare field. We have massive amounts of PHI for the majority of people who have visited a provider within the country. We apply all sorts of stuff to this data, ML, AI or whatever other buzzy tech you can think of. Most of this work happens within our own data centers but there is significant work done within public clouds. We…

> I work for a large US based corp that focuses on technology and data services for the healthcare field. We have massive amounts of PHI for the majority of people who have visited a provider within the country. The real question here is: why can't I opt-out ? I want a easy button when I do anything medical to say "no, don't use my health data for any of this stuff". And the current CA privacy law does not provide th…

This I exactly it. In Texas, there is always a check box about sharing. I opt out 100% of the time. This only covers a specific use case though and there are still tons of sharing agreements in place that I can't do anything about. I'd opt out of all of them if I could but at least knowing how many places my data exist would be a start.

Re: Google whistleblower: the medical data of millions of Americans is at risk

#43

What is the risk of exposing our health data? To me it is not so obvious, other than maybe embarrassment? Is it like how in our culture we don't like to talk about how much money we make? Why are all these things supposed to be secret in the first place?

Because your medical information can be used against you. Want a new job? Nope! We don't want someone with your condition on our team. Want to buy a house? Nope! An AI bot says may not live long enough to pay the loan. Want to get some ice cream? Can't haz. When you swipe your electronic payment method the database says you're at a risk for diabetes. There are thousands of other scenarios.

[deleted]

Re: Google whistleblower: the medical data of millions of Americans is at risk

#44
post #6

I work for a large US based corp that focuses on technology and data services for the healthcare field. We have massive amounts of PHI for the majority of people who have visited a provider within the country. We apply all sorts of stuff to this data, ML, AI or whatever other buzzy tech you can think of. Most of this work happens within our own data centers but there is significant work done within public clouds. We…

The irony, of course, (as anyone with failed ML launch at Google knows, haha) is that internally Google has extremely strong privacy practices and safeguards and probably is the best organization to actually handle this data correctly.

As for de-anonymization, of course raw data should be pre-anonymized: anonymization is a major source of mistakes in the data, often rendering data useless, and needs to be done correctly by the people who know how to do it correctly.

Re: Google whistleblower: the medical data of millions of Americans is at risk

#45
post #40
post #6

I work for a large US based corp that focuses on technology and data services for the healthcare field. We have massive amounts of PHI for the majority of people who have visited a provider within the country. We apply all sorts of stuff to this data, ML, AI or whatever other buzzy tech you can think of. Most of this work happens within our own data centers but there is significant work done within public clouds. We…

I've seen a ton of responses from people in the industry along the lines of "this is normal" or similar. People who work on this stuff are incredulous that there's even an issue, since everyone's health info is already being uploaded to AWS or something. This is business as usual, they say. The uproar is taken by people actually working in the business as a sign that the public are ignorant and misinformed. Things ar…

But if they're just using Google as cloud storage/compute it's not being shared. Only very few Google employees would have access, they'd have very careful limitations and access on who accessed what - that's not the same as giving to google for some big AI experiment.

Re: Google whistleblower: the medical data of millions of Americans is at risk

#46
post #40
post #6

I work for a large US based corp that focuses on technology and data services for the healthcare field. We have massive amounts of PHI for the majority of people who have visited a provider within the country. We apply all sorts of stuff to this data, ML, AI or whatever other buzzy tech you can think of. Most of this work happens within our own data centers but there is significant work done within public clouds. We…

I've seen a ton of responses from people in the industry along the lines of "this is normal" or similar. People who work on this stuff are incredulous that there's even an issue, since everyone's health info is already being uploaded to AWS or something. This is business as usual, they say. The uproar is taken by people actually working in the business as a sign that the public are ignorant and misinformed. Things ar…

I share that perception. For me, this is a sign that people working with the data, probably should not work with this data. They don't really make a good case.

And saying this is business as usual is extremely disingenuous, since the distribution of information was completely different just a few years ago.

Re: Google whistleblower: the medical data of millions of Americans is at risk

#48

What is the risk of exposing our health data? To me it is not so obvious, other than maybe embarrassment? Is it like how in our culture we don't like to talk about how much money we make? Why are all these things supposed to be secret in the first place?

So essentially the answer I'm hearing is that there is a fear of what other people will do with the information. Mostly around discrimination and shame.

Re: Google whistleblower: the medical data of millions of Americans is at risk

#49

What is the risk of exposing our health data? To me it is not so obvious, other than maybe embarrassment? Is it like how in our culture we don't like to talk about how much money we make? Why are all these things supposed to be secret in the first place?

Because your medical information can be used against you. Want a new job? Nope! We don't want someone with your condition on our team. Want to buy a house? Nope! An AI bot says may not live long enough to pay the loan. Want to get some ice cream? Can't haz. When you swipe your electronic payment method the database says you're at a risk for diabetes. There are thousands of other scenarios.

The can't get ice cream one is a bit far fetched eh? I'm sure that no matter if they knew my health history they would still sell me some ice cream :)

Re: Google whistleblower: the medical data of millions of Americans is at risk

#50

What is the risk of exposing our health data? To me it is not so obvious, other than maybe embarrassment? Is it like how in our culture we don't like to talk about how much money we make? Why are all these things supposed to be secret in the first place?

What is the risk of talking about this? Why is this article pushed to page 2?

    32.  How we built Uber Engineering's highest query-per-second service using Go (2016) (162 points, 11 hours ago, 102 comments)
    33.  Google whistleblower: the medical data of millions of Americans is at risk (160 points, 2 hours ago, 45 comments)
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