Google's 'Project Nightingale' Gathers Personal Health Data on Millions of Americans

[Julian Englis]

Source: Wall Street Journal

Google is engaged with one of the country’s largest health-care systems to collect and crunch the detailed personal health information of millions of Americans across 21 states.

The initiative, code-named “Project Nightingale,” appears to be the biggest in a series of efforts by Silicon Valley giants to gain access to personal health data and establish a toehold in the massive health-care industry. Amazon.com Inc., AMZN -0.80% Apple Inc. AAPL 0.79% and Microsoft Corp. are also aggressively pushing into health care, though they haven’t yet struck deals of this scope.

Google began Project Nightingale in secret last year with St. Louis-based Ascension, the second-largest health system in the U.S., with the data sharing accelerating since summer, according to internal documents.


The data involved in the initiative encompasses lab results, doctor diagnoses and hospitalization records, among other categories, and amounts to a complete health history, including patient names and dates of birth.

Read more: https://www.wsj.com/articles/google-s-secret-project-nightingale-gathers-personal-health-data-on-millions-of-americans-11573496790

---

This is outrageously wrong!

[ananda]

1. HIPAA anyone?

WTF!

[dalton99a]

9. Their lawyers approved:

Some Ascension employees have raised questions about the way the data is being collected and shared, both from a technological and ethical perspective, according to the people familiar with the project. But privacy experts said it appeared to be permissible under federal law. That law, the Health Insurance Portability and Accountability Act of 1996, generally allows hospitals to share data with business partners without telling patients, as long as the information is used “only to help the covered entity carry out its health care functions.”

Google in this case is using the data, in part, to design new software, underpinned by advanced artificial intelligence and machine learning, that zeroes in on individual patients to suggest changes to their care. Staffers across Alphabet Inc., Google’s parent, have access to the patient information, internal documents show, including some employees of Google Brain, a research science division credited with some of the company’s biggest breakthroughs.

In a press release issued after The Wall Street Journal reported on Project Nightingale on Monday, the companies said the initiative is compliant with federal health law and includes robust protections for patient data.

[dobleremolque]

29. tRump's lawyers say the same thing! Fancy that! n/t

[wysimdnwyg]

39. Trump's lawyers aside, it is legal

It's distasteful (at best) on the surface, but there are very valid reasons for people outside your immediate scope of healthcare to have access to records. That said, depending on how the data is being used, it could be acceptable to de-identify it so that an individual record could not be linked back to a specific patient. This typically involves removal or encryption of all demographic data as well as selected other data elements, without impacting the benefits or diagnosis/procedure.

I work in Healthcare IT, and we need access to the data all the time. While most of you see "PRIVACY VIOLATION!!", I see "competition". They will be using the data to advance healthcare technology, which is, in many ways, the same thing I do on a daily basis. With proper restrictions and data safety protocols (high levels of data access security, strong encryption, etc.), most of the people working on these projects will probably never see a name or SSN, as those won't be needed for their daily work. At that point, it's perfectly compliant with HIPAA.

[Igel]

45. But if the goal is to link back findings to individual healthcare,

then you need that info.

[wysimdnwyg]

47. Yes, but if no people see it, it's not a violation

What you suggest is internal to the software, and not something random Google employees would need to access. I’m sure some of the developers will as they perfect the programming, but those people, like me in my job, will be under strict security protocols that prevent unnecessary or unauthorized access. I suspect that once this is live, the only people who will see the data are healthcare providers.

I understand the concern people have, but this type of thing is a common part of the future of healthcare technology.

[Faux pas]

2. Kickin' with disgust!

[Liberty Belle]

3. Article is behind a paywall. Can anyone post more?

This is deeply disturbing and hard for me to see how this can be legal.

[LeftInTX]

7. I found this

https://www.theverge.com/2019/11/11/20959771/google-health-records-project-nightingale-privacy-ascension

My personal opinion: Since electronic records are now the thing, health care companies should not be contracting with Google, Amazon, Apple or other companies with the potential to share data in other platforms.

[dalton99a]

10. Here:

[du_grad]

35. HIPAA is pounded into our heads on a yearly basis

...when we work in hospitals. I am a retired medical technologist. If we accessed any lab results on any patient, our lab number tagged what we were looking at so the hospital IT department could, if they wanted to, see what we looked at any time we signed into a computer. We had to sign out patient results and sometimes look at results outside our department to correlate what other results we were reporting, so we were into a lot of charts during a shift as part of our job. Yet these mega-corporations just let the asshole people at Project Nightingale look at anything willy nilly. This is just SO WRONG.

A nurse in our city (at a different hospital than mine) was going into many charts for info a few years ago. She was found out, fired, and prosecuted. Her name was out there in the news for everyone to see. Needless to say, she will never get another job in health care. Yet these bozos can do it on the QT and never get caught.

Unbelievable! They should call the program "Beancounters Unleashed."

[Lonestarblue]

4. People need to start demanding data privacy from their doctors.

I have an annual checkup coming up soon, and I will definitely ask my doctor about this.

I can just see rabid Republicans using this intrusive data to track women’s periods (already done in Missouri) to see who might have been pregnant and had an abortion or miscarriage or whose teenage daughter might be taking birth control so she can be shamed, especially if parents are politicians or politically active.

Insurance executives will use the data to find ways to exclude coverage for some illnesses because they’ll claim that patients contributed to them through their behavior.

[Firestorm49]

5. Privacy laws? My ass.

I’ve got to jump through hoops to allow my family permission to be included in health related matters, yet the insurance companies hand out personal information like M&Ms. What a joke.
Buy an Apple Watch, get a health care policy free.

[JudyM]

6. Check out this talk by Google's former Chief Design Ethicist. What's behind the curtain is chilling

vimeo.com/332532972

It’s 40 minutes but so worth it, for folks who don’t know a lot about data mining / ad targeting.

[alwaysinasnit]

11. This was great. Definitely broadened my horizons. Thank you.

[JudyM]

12. Right? Important to understand what's really happening.

[alwaysinasnit]

13. I will be sharing the link to this video. And, as an aside, I have always had an instinctive

aversion to having a smartphone. Now I understand why (not that they aren't useful, but they can bring about a lot of harm). Thanks again!

[appalachiablue]

17. Interesting you should say that, I've resisted upgrading to

a 'smartphone' based on my instinct and now it's clear why. A natural aversion.

[alwaysinasnit]

18. Prior to watching Judi M's posted video, my aversion stemmed from an amorphous distrust of

corporations and their exploitation of both consumers and the data we inadvertently give away. I now have another reason not to upgrade(?) to a 'smartphone.'

[appalachiablue]

20. Same. But Verizon is messing with my perfectly fine flip phone

which I pay by refill. They've recently eliminated standard features on my phone (no listening to vm's, no texting, etc.) to force me to upgrade to a monthly contract and smartphone, which I don't need. So I'm holding out until I can figure out another solution.

[alwaysinasnit]

21. Yes, I can relate (I, too, have Verizon).

[BigOleDummy]

36. Laugh all...

…… you want but I use Trac Phone. So FAR at least they haven't restricted and/or tried any shenanigans like that. I have service everywhere (retired now but traveled extensively in my work) , refill by card or online/onair , can have texts and voice mail. The only thing it doesn't do is track me (no gps) and no pictures in texts. Has a browser so I guess its net capable but I've never opened it. Plus, I spend about $80 a YEAR for it. Full disclosure I rarely use it for anything other than texts and calling my Sister or Brother every other week or so.

[appalachiablue]

37. Thanks much for the reminder and info. I'll definitely check into

Trac fone.

[Ferrets are Cool]

25. Unfortunately, many people who run their own companies (me)

cannot operate without smartphones. Say what you will, it is a necessary evil in the world we live in as business people.

[alwaysinasnit]

27. I do understand. My comments were geared toward individual/personal usage of smartphones.

[Ferrets are Cool]

28. Nodding

[Dem2theMax]

14. Kicking, so I can come back and watch the video later tonight.

Thank you for posting it.

[Kurt V.]

16. Larry Page based google search engine on data mining. :(

[dalton99a]

31. +1. And the primary motivation for Android was data collection for Google

[dalton99a]

30. +1

[dalton99a]

8. NEXT: Google announces partnership with insurers to set rates based on risk profiles

gleaned from project

[Kurt V.]

15. they bought fitbit

[Auggie]

22. Why we need consumer rights' advocates like Elizabeth Warren

[RainCaster]

23. BREAKING: You are f**ked

Sorry, but it's game over.

If you post on any MS, incontinence, alcoholism, etc. boards, you have inadvertently contributed to this. Whatever community groups you belong to, odds are, they link to Google and that's all you need to know. You have now been stuffed into this massive database of medical outliers who will be receiving higher premiums because of this.

Congratulations.

[aggiesal]

24. And yet people are buying ...

Alexa gadgets from Amazon and Google Assistant gadgets from Google,
that always listenig to everything you're doing.

These things are flying off the shelves because everyone thinks they're cool.
https://www.cnet.com/how-to/amazon-and-google-are-listening-to-your-voice-recordings-heres-what-we-know/

Get out of cloud based systems. Stop using gmail.com
Stop buying Google Assistant capable gadgets, and stop
using android based phones, stop using google.com

Everyone one of these "Features" is recording everything you're doing.

[OhNo-Really]

34. Ugh! Google bought FitBit

https://www.pbs.org/newshour/economy/making-sense/google-bought-fitbit-what-does-that-mean-for-your-data-privacy

Privacy is sooooo last Century.

[thenelm1]

26. The states have been working towards this for some time.

Back a few years ago when I was still working in IT we were sending patient data to a state repository. Our data engine was connected directly to the state's vendor and would send certain patient transactions to them directly (admissions, discharges, etc.) almost in real time. There was also batch file of financial transactions that would get created and sent to the state at least monthly. This was actually a Fed initiative with the end game being to combine the individual state dbs into a national db.

The big difference in the state/Fed db from this Google project (which is presumably for their commercial benefit) was that patients were given the option to opt out of participating in the gov't project and, if they did sign up, they could actually access their own data from all participating med facilities. That was the concept they were working towards, but I've been out of the game for a few years now so things may have changed some. On the other hand I still get asked if I want to participate on the patient portal when I visit a doctor.

[iluvtennis]

32. This is not good. I se this expanding into companies using it to increase employee payments

for employer provider health insurance.

[mathematic]

33. Healthcare providers using information to provide healthcare?

OH THE HUMANITY.

If the healthcare industry were half as effective as Big Tech, we'd all live to 150 years old and pay for it with couch nickels.

Providing healthcare is a notoriously difficult data problem. People change doctors, have bad memories about their medical history, have strange and unusual diseases, and don't use the same name throughout their lives. All these things lead to medical mistakes, misdiagnoses, and bad outcomes.

Everybody hates insurance companies. Great. Everybody loves doctors and nurses. Great. These projects by Big Tech are tools to help doctors and nurses do what they do, better. It's not a way for insurance companies to charge you more money based on your medical history. The ACA made that illegal (thanks Obama!). The point is to sell cloud hosting and software solutions to healthcare providers, not to farm data for ad networks. That's why the three largest could computing companies amazon, microsoft, and google, are the ones doing this. When Facebook and Twitter, which are solely ad companies, start doing it, it's time to worry.

[Sapient Donkey]

41. At the very least this should be opt-in. If people agree to allow their information to be sent

then by all means send away. Also, I would think the companies that get this data should have to pay the individuals who opt-in for this data.

[Maxheader]

38. The gop bastards...

trying to get into our personal lives..personal info..This bs by barr would promote internet snooping and other invasion of privacy acts by the jackbooted winger handjobs..

The same tactics that law-enforcement officials developed to stop terrorists should be adopted to prevent mass shootings, Attorney General William Barr said in a memo released Wednesday directing the FBI to find ways to better identify and thwart such attacks.

https://www.wsj.com/articles/barr-wants-to-adopt-terrorism-prevention-tactics-to-stop-mass-shootings-11571864324

[Blue_Tires]

40. Greenwald and Snowden were unavailable for comment

God, I remember getting shouted down on this very forum back in 2013-14 when Snowden first came on the scene, just for even mentioning corporate data collection...

(Not to worry about reprisals, because 99% of the DUers who used to snipe me are long gone, even the high profile ones)

[CrispyQ]

42. Privacy is dead.

The genie's out of the bottle. How do we put it back in? EMP? Cuz I don't see how laws will work. They can collect the data without our knowing. I don't kid myself that when I turn location services off on my smart phone that Apple/Google isn't still tracking the phone, even if they aren't sharing it with my apps.

We opted for convenience over privacy. At the very least, we went full speed ahead to have access to convenience before we thought about the implications. Kind of like electronic voting. And when I say we, I mean the general public.

[bucolic_frolic]

43. HIPAA

If we had Feds they would fine these executive perps into oblivion. HIPAA violations are serious, and the fines are severe, even for health care organizations. Plus oversight is increased.

Don't see why this isn't a massive invasion of privacy. If a health care worker outs ONE patient, all holy hell rains down on them, and their employer. Lawsuits for damages can result. Lawsuits against the health care providers, and against the individuals involved.

How is this different? Yeah, I know, big bucks, corporate scheming. That's not different. That's political and legal power.

[ancianita]

44. Add to that Thomson Reuters Westlaw. 68 countries, 40,000 databases since 1992. Chuck Schumer,in

2005, publicized the fact that Westlaw has a database containing a large amount of private information on practically all living Americans. Besides widely available information such as addresses and phone numbers, Westlaw has Social Security numbers (SSNs), previous addresses, dates of birth, and other information lawyers use to do background checks...

Point is, if you're alive, your life is uneraseably "out there" in digital form by now.

Americans might as well face that their personal data is available and going to court won't get it back.

If you're outraged, just know that stealth data mining has been going on for over 27 years.

At least we're learning what big database servers have it.

Too little, too late, though, if you care about privacy.

[meadowlander]

46. "Yeah fuck it, be evil."