Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Google AI has access to huge haul of NHS patient data

newscientist.com

Post reply on HN
Print view View original

61–70 of 83 posts

Re: Google AI has access to huge haul of NHS patient data

#61

Post by adamsea »

cromwellian wrote: post #24

I think this situation nicely juxtaposes positive externality with private rights. As an individual, you may wish to hoard all of your personal medical information. Doing so may provide marginal benefit or protection against some theoretical harms. However, much of medical science relies on large population studies. Is knee surgery worth it? Are breast exams? Do COX-2 inhibitors increase heart attacks? Enormous amoun…

It's an interesting question for sure. There are issues of consent which, especially for poor or marginalized people, should be addressed. Like Henrietta Lacks...

I think in this case and others like it the family, at minimum, has a right to know. "...it was not until 1973, when a scientist called to ask for blood samples to study the genes her children had inherited from her, that Ms. Lacks’s family learned that their mother’s cells were, in effect, scattered across the planet. Some members of the family tried to find more information. Some wanted a portion of the profits that companies were earning from research on HeLa cells. They were largely ignored for years."

http://www.nytimes.com/2013/08/08/science/after-decades-of-r...

Re: Google AI has access to huge haul of NHS patient data

#62

Post by chris_va »

buro9 wrote: post #46
chris_va wrote: post #32

Earlier quoted context omitted.

You are making some implicit assumptions that they data access isn't highly controlled. I have seen a few of these sorts of deals killed because of data access concerns, and/or computation requirements ("you can have access to anonymized data, but you have to run your code in a sandbox on our health servers"). And, this is why we have legislation.

Less implicit, from the originally linked article: > The scale of the sharing program was apparently misrepresented to the public, originally announced as an app to help hospitals monitor patients with kidney disease with real-time alerts and analytics. But since those patients don't have their own separate dataset, Google has argued it needs access to all patient data from the participating hospitals. No assumption…

"so granted access to all patient data"

Yes, but under what conditions? Many privacy laws apply here, and treating Google as some monolithic entity where everyone working there can now read anyone's personal health history is inaccurate.

Re: Google AI has access to huge haul of NHS patient data

#63

Post by fucking_tragedy »

savanaly wrote: post #49
AlexandrB wrote: post #44

Earlier quoted context omitted.

> Whenever I visit the doctor and I am given a form asking if my data can be sent to some group to participate in a study, I always answer yes. Never once have I had any negative repercussions from doing so, and it is my hope that the data was used to publish scientific papers that added to net knowledge of humanity. I've grown cynical. My first thought on seeing this kind of form is that a third party will be making…

It's going to sound like I'm telling you how to live your life and how to feel and I really don't mean it that way but I don't know any other way to express my viewpoint so I'll just power through it: The idea that someone, somewhere is making a profit on something you provided should make you happy, not sad. To make a profit, they had to be paid, and to be paid they normally have to have provided something that some…

Value to a private entity != value to me, society or entities that matter to either.

Especially when that private entity gains more power through my data and tries everything from questionable business practices to lobbying to make sure they, and only they, reap the benefits.

People value chemical weapons and forced labor as well. They're willing to pay a lot for them, too.

Re: Google AI has access to huge haul of NHS patient data

#64

Post by fweespee_ch »

DanBC wrote: post #55
fweespee_ch wrote: post #54

Earlier quoted context omitted.

> Why are people astonished? Because politicians keep making promises in regards to privacy that they don't keep in regards to "confidential" information. Similarly, most of the medical value from such information [e.g. Frequency of X within a given population fitting certain characteristics] would likely deanonymize people.

No politician was involved in this decision.

http://www.bbc.com/news/uk-16021240

> "All necessary safeguards would be in place to ensure protection of patients' details - the data will be anonymised and the process will be carefully and robustly regulated.

> "Proper regulation and essential safeguards need to be in place when it comes to patients data," he said. "It cannot be done in a way where essential rules are threatened."

The legality of these data sharing laws start off with public promises of anonymization, robust regulation, safeguards, and privacy.

https://www.england.nhs.uk/2014/01/geraint-lewis/

> Amber data are where we remove each patient’s identifiers (their date of birth, postcode, and so on) and replace them with a meaningless pseudonym that bears no relationship to their “real world” identity. Amber data are essential for tracking how individuals interact with the different parts of the NHS and social care over time. For example, using amber data we can see how the NHS cares for cohorts of patients who are admitted repeatedly to hospital but who seldom visit their GP. In theory, a determined analyst could attempt to re-identify individuals within amber data by linking them to other data sets. For this reason, we never publish amber data. Instead, amber data are only made available under a legal contract to approved analysts for approved purposes. The contract stipulates how the data must be stored and protected, and how the data must be destroyed afterwards. Any attempt to re-identify an individual is strictly prohibited and there is a range of criminal and civil penalties for any infringements.

The problem with psuedonymous data is the NHS basically admits it can be used to identify people given sufficient effort.

---

That is why people are "astonished" by these decisions. The politician provides the initial promises that imply anonymity, the implementation doesn't provide true anonymity but provides criminal penalties for pulling off the mask, and then the data is handed to enough 3rd parties if such data is leaked its likely impossible to know by whom unless the data was tampered with to provide a per-contract identifier.

I understand this specific decision did not involve a politician but the conversation was why people are surprised. How many people do you think really know the anonymity originally promised became a permeable pseudonym?

Re: Google AI has access to huge haul of NHS patient data

#65

Post by fweespee_ch »

chris_va wrote: post #62
buro9 wrote: post #46

Earlier quoted context omitted.

Less implicit, from the originally linked article: > The scale of the sharing program was apparently misrepresented to the public, originally announced as an app to help hospitals monitor patients with kidney disease with real-time alerts and analytics. But since those patients don't have their own separate dataset, Google has argued it needs access to all patient data from the participating hospitals. No assumption…

"so granted access to all patient data" Yes, but under what conditions? Many privacy laws apply here, and treating Google as some monolithic entity where everyone working there can now read anyone's personal health history is inaccurate.

Its psuedononymous data the NHS has previously admitted can be deanonymized given sufficient effort but such deanonymization carries criminal and civil penalties.

Re: Google AI has access to huge haul of NHS patient data

#66

Post by jlarocco »

nezumi wrote: post #7

Terrible reporting. Improving health outcomes by AI analysis of patient data is a much bigger prize - morally and commercially - than anything which could be achieved through ad targeting. Google is far too smart to squander such an opportunity by abusing patients' trust.

That seems incredibly naive. They utilize every other bit of information they collect, why wouldn't they utilize this data?

Google is a corporation. It can't have good intentions of its own. It's the thousands of employees who will potentially be working with and handling the data that you need to worry about.

Re: Google AI has access to huge haul of NHS patient data

#67

Post by aub3bhat »

fweespee_ch wrote: post #64
DanBC wrote: post #55

Earlier quoted context omitted.

No politician was involved in this decision.

http://www.bbc.com/news/uk-16021240 > "All necessary safeguards would be in place to ensure protection of patients' details - the data will be anonymised and the process will be carefully and robustly regulated. > "Proper regulation and essential safeguards need to be in place when it comes to patients data," he said. "It cannot be done in a way where essential rules are threatened." The legality of these data sharin…

>> The problem with psuedonymous data is the NHS basically admits it can be used to identify people given sufficient effort.

It seems you have disagreement with the system adopted by NHS and several others worldwide. This has nothing to do with Google or Politicians. The system emerged from decades of research and understanding of compromise between the need to protect privacy and advancement of medical research. You are free to suggest alternatives over current system. I have studied this problem for last five years and there isn't a simple solution.

Re: Google AI has access to huge haul of NHS patient data

#68

Post by fweespee_ch »

aub3bhat wrote: post #67
fweespee_ch wrote: post #64

Earlier quoted context omitted.

http://www.bbc.com/news/uk-16021240 > "All necessary safeguards would be in place to ensure protection of patients' details - the data will be anonymised and the process will be carefully and robustly regulated. > "Proper regulation and essential safeguards need to be in place when it comes to patients data," he said. "It cannot be done in a way where essential rules are threatened." The legality of these data sharin…

>> The problem with psuedonymous data is the NHS basically admits it can be used to identify people given sufficient effort. It seems you have disagreement with the system adopted by NHS and several others worldwide. This has nothing to do with Google or Politicians. The system emerged from decades of research and understanding of compromise between the need to protect privacy and advancement of medical research. You…

1) I have a disagreement with bait and switch data privacy laws that are publicly sold as anonymous when everyone can tell from the implementation details that they are not.

2) You asked why they were astonished. Well, #1 is why. Most people don't have the time/energy/desire to study the implementation details on every facet of their lives.

Re: Google AI has access to huge haul of NHS patient data

#69

Post by jtmcmc »

imglorp wrote: post #22
nezumi wrote: post #7

Terrible reporting. Improving health outcomes by AI analysis of patient data is a much bigger prize - morally and commercially - than anything which could be achieved through ad targeting. Google is far too smart to squander such an opportunity by abusing patients' trust.

It so happens Google has the perfect means at its disposal for de-anonymizing large swaths of such data: trillions of user location records, calendar appointments, emails, and texts. It's not too hard to put all that together to match a specific encounter record, for example.

which would both violate their contract and also be illegal.

Re: Google AI has access to huge haul of NHS patient data

#70

Post by [deleted] »

fweespee_ch wrote: post #68
aub3bhat wrote: post #67

Earlier quoted context omitted.

>> The problem with psuedonymous data is the NHS basically admits it can be used to identify people given sufficient effort. It seems you have disagreement with the system adopted by NHS and several others worldwide. This has nothing to do with Google or Politicians. The system emerged from decades of research and understanding of compromise between the need to protect privacy and advancement of medical research. You…

1) I have a disagreement with bait and switch data privacy laws that are publicly sold as anonymous when everyone can tell from the implementation details that they are not. 2) You asked why they were astonished. Well, #1 is why. Most people don't have the time/energy/desire to study the implementation details on every facet of their lives.

[deleted]
Post reply on HN