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Google AI has access to huge haul of NHS patient data

newscientist.com

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

#41

Post by chris_va »

throwanem wrote: post #39
chris_va wrote: post #31

Earlier quoted context omitted.

Seems pretty simple, really. 1000 patients come in with symptoms that look like cancer at year 0. 100 actually get diagnosed with cancer at some point between year 0 and year 5. Presumably, the remaining 900 didn't have cancer at year 0.

"Seems". You can't know what fraction of your remaining 900 had cancer but weren't diagnosed with it for any of a wide variety of reasons, from death through misadventure, through false negative, to simple loss to followup. Clinical studies are designed to exclude such confounding outcomes. It's very difficult to see how any study of this data could be designed to do likewise.

True, but I think you can mitigate these issues.

Especially for the NHS dataset, since you will either see the patient in there or in a death index (unlike, say, US where they may have just gone to another hospital).

Also, the scope here is more like a longitudinal vaccine study than a clinical trial. 50M people will provide a lot of robustness that you wouldn't see in a 1000 patient trial.

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

#42

Post by Silhouette »

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…

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 that's your choice. Unfortunately, someone else committed suicide because they didn't ask for the help they needed for their mental health issues because of justified concern that their condition would leak and it would lead to discrimination.

There are many reasons privacy is important. Among the most important is the ability to have completely open discussions with clinical professionals about any medical issues you have, without having to worry that anyone has any ulterior motives or that anything you say could come back to haunt you later.

It is difficult enough for some people to talk about some conditions even with their own doctor in the privacy of the doctor's office. Probably some valuable benefits would result if we dropped privacy altogether and allowed widespread analysis of clinical data. However, it is an absolute certainty that serious damage is done both when patient confidentiality is perceived to be threatened (through patients not raising issues in the first place) and when patient confidentiality is in fact compromised (through discrimination of various kinds, much of which may be based on misconceptions).

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

#43

Post by ocdtrekkie »

CaptSpify wrote: post #18
ocdtrekkie wrote: post #14

This is probably one of the reasons some may be opposed to nationalized healthcare... The government making a widespread decision to send your medical data somewhere without your permission.

Although that is a valid concern, we can have nationalized health-care without the government sending data elsewhere. Those two aren't inclusive of each other.

True, but when the data is in private hands, the government sets regulations, like HIPAA here in the US, to regulate those companies' actions. Meanwhile, the government can and often does do what it wants with what it has.

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

#44

Post by AlexandrB »

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…

> 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 money from the information I provide somehow - whether it's through patented drugs or treatments or through pay journals like those owned by Elsevier. Neither I, nor anyone I know, will get to benefit from from the information I provide without spending money (often exorbitant amounts of it). This is the flip side of privatizing everything. Why should I lift a finger to help for-profit entities when they will not do the same to help me?

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

#45

Post by pavel_lishin »

AlexandrB wrote: post #44
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…

> 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…

> Why should I lift a finger to help for-profit entities when they will not do the same to help me?

But if releasing your data leads to research that can save lives, isn't that worth doing even if someone gets rich in the process? I'd much rather there exist a million-dollar treatment that can save my life at the cost of living in debt for the next twenty years, rather than die in six months because the research was never done.

(Yes, this is a false dichotomy - there should be a better way of administering treatments and doing medical research.)

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

#46

Post by buro9 »

chris_va wrote: post #32
buro9 wrote: post #10

Earlier quoted context omitted.

The big problem is the precedent it sets for data access. What are the criteria for who gets access? What are the constraints of that access? This story covers the latter being blown apart, the constraints were poorly defined and implemented and thus even if the criteria is well defined access to far more data was made possible. I'm sure that few patients desire an end to research, or would argue that such access isn…

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 there, they didn't have a separate dataset and so granted access to all patient data.

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

#48

Post by throwanem »

chris_va wrote: post #41
throwanem wrote: post #39

Earlier quoted context omitted.

"Seems". You can't know what fraction of your remaining 900 had cancer but weren't diagnosed with it for any of a wide variety of reasons, from death through misadventure, through false negative, to simple loss to followup. Clinical studies are designed to exclude such confounding outcomes. It's very difficult to see how any study of this data could be designed to do likewise.

True, but I think you can mitigate these issues. Especially for the NHS dataset, since you will either see the patient in there or in a death index (unlike, say, US where they may have just gone to another hospital). Also, the scope here is more like a longitudinal vaccine study than a clinical trial. 50M people will provide a lot of robustness that you wouldn't see in a 1000 patient trial.

> you will either see the patient in there or in a death index

Or you won't see any new information for the patient, because the patient is lost to followup. Or - worse - you'll see new information, but it'll be invisibly erroneous, because random GPs don't work to the standard that physicians administering examinations in clinical studies do.

> 50M people will provide a lot of robustness that you wouldn't see in a 1000 patient trial

Not if the 1000-patient trial is well designed, and the data of those 50M people is totally uncontrolled and unverified. This isn't warfare - Stalin's dictum has no place here. You can't overcome the flaws of a dirty dataset by adding more dirty data to it, especially when you literally cannot know either the magnitude or the nature of the inaccuracy, or even tell what's accurate from what's not.

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

#49

Post by savanaly »

AlexandrB wrote: post #44
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…

> 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 someone wanted enough to part with cash. That cash changed hands is not the main point of the transaction (it's a net zero for society, someone gained cash and someone lost it), the main point is rather that something of value was created.

You threw out the example of pay journals like Elsevier. It is true that for cases like that, there may be a market inefficiency that means not much value is created. But I think those are edge cases and relatively rare. Even if our worst fears about Elsevier and other rent seeking journals are true, it would still be the case that you're helping rather than hurting by providing anonymized personal data.

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

#50

Post by sp332 »

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.

Google is not a monolithic entity. You'd have to trust the individual researchers who have access to the data, and we don't even know who they are. And the NHS didn't ask their patients for permission before handing this data over, so whether you trust them or not is irrelevant, they get your data anyway.
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