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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

#51

Post by aub3bhat »

Why are people astonished?

For more than a decade researchers have been able to get access to large deidentified datasets. As a PhD student I have access to data on 150 Million visits by 45 Million patients. In some ways the data and access I have is superior to that of Google & NHS (since UK is a tiny country in comparison to USA), and I am just a PhD student. Though I have been working on it for last 5 years.

Recently there is a new qualified entity program run by CMS which provides access to Medicare data.

You can read more about my research and see the demo of the system in my past submissions and at

http://www.computationalhealthcare.com

Also for the actual govenment program http://www.ahrq.gov/research/data/index.html

Actually when it comes to Medical information its a much much more complex problem legally. This paper gives a good overview on issue of "Patient ownership of data" http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1857986

I am by no means minimizing the concenrs that people have. But I think the article paints Google in negative light while ignoring current standard practices. I wish the discussion would be more rooted in the facts about how such data sharing systems work currently.

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

#52

Post by kuschku »

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…

It’s more like "you sold something under price".

You might have sold your own data for a higher price if you had known.

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

#53

Post by aub3bhat »

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…

You are correct there are already laws and systems in place. E.g. here is an interesting paper in New England Journal of Medicine using California data. Note: Not published by me but someone who I work with.

http://www.nejm.org/doi/full/10.1056/NEJMoa1311485

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

#54

Post by fweespee_ch »

aub3bhat wrote: post #51

Why are people astonished? For more than a decade researchers have been able to get access to large deidentified datasets. As a PhD student I have access to data on 150 Million visits by 45 Million patients. In some ways the data and access I have is superior to that of Google & NHS (since UK is a tiny country in comparison to USA), and I am just a PhD student. Though I have been working on it for last 5 years. Recen…

> 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.

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

#55

Post by DanBC »

fweespee_ch wrote: post #54
aub3bhat wrote: post #51

Why are people astonished? For more than a decade researchers have been able to get access to large deidentified datasets. As a PhD student I have access to data on 150 Million visits by 45 Million patients. In some ways the data and access I have is superior to that of Google & NHS (since UK is a tiny country in comparison to USA), and I am just a PhD student. Though I have been working on it for last 5 years. Recen…

> 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.

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

#56

Post by AlexandrB »

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…

> The idea that someone, somewhere is making a profit on something you provided [for free] should make you happy, not sad.

This seems like a double standard. Why should I be happy when corporations will regularly go to court to make sure that nothing they create returns to the public domain within my lifetime? The norm seems to be capturing this kind value wherever (and for a long as) possible, not distributing it freely for the good of mankind.

I'm not making a normative argument that this is a healthy way to live or for society to operate. In a functional community resources, ideas, and capabilities may be shared freely for the benefit of all, but it can't always go one way. That's exploitation, not community.

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

#57

Post by [deleted] »

fweespee_ch wrote: post #54
aub3bhat wrote: post #51

Why are people astonished? For more than a decade researchers have been able to get access to large deidentified datasets. As a PhD student I have access to data on 150 Million visits by 45 Million patients. In some ways the data and access I have is superior to that of Google & NHS (since UK is a tiny country in comparison to USA), and I am just a PhD student. Though I have been working on it for last 5 years. Recen…

> 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.

[deleted]

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

#58

Post by Houshalter »

rtkwe wrote: post #30
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…

> assuming they could not be de-anonymized That's where the problem is anonymizing data is really difficult and it takes only a few bits of info to associate that data with a name. It takes only 3 pieces of information to uniquely identify 87% of people, Zip code, birthday, and sex. http://arstechnica.com/tech-policy/2009/09/your-secrets-live... http://dataprivacylab.org/projects/identifiability/paper1.pd...

On the other hand anonymization destroys useful data (along with already poor record systems.) There was a Kaggle competition with medical data that had been so thoroughly damaged that 5 year old boys were listed as pregnant.

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

#59

Post by [deleted] »

halhodson wrote: post #16
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.

but we don't really have the consent-at-scale technology for anything else, do we? tbh it's just this specific NHS Trust that made the call in this instance. Personally, I see potential in ResearchKit to solve the consent problem re medical data

[deleted]

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

#60

Post by aub3bhat »

halhodson wrote: post #15
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.

not sure if you saw my comment downstream? would encourage you to read original piece for a more nuanced presentation of the information - https://www.newscientist.com/article/2086454-revealed-google... happy to address criticism

Hi Hal I thought the article should have compared and contrasted with other government run large data sharing programs such as CMS qualified entity or AHRQ HCUP.
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