[Three of Seven]

Source: https://www.newscientist.com/article...-patient-data/

What do you think on Google just being handed patient data, including the names, so it's not even anonymous data. Nor is all of it relevant to what Google want to do with it and now they have that data, they can use it on other things.

Shouldn't data like this be done via consent and not just handed over to a big company!

What are your thoughts?

[Solace]

I have to admit I am very angry about this news. I mean Google is primarily a search engine, why would they need access to this kind of information? Patient data is private for a reason, I fully believe in Doctor Patient confidentiality, we use Doctors to help with issues and problems we don't want publicized. I think we should have been afforded an opportunity to consent to this action.. its common decency!

Google is known for selling personal details on to other companies for a profit, this just got even worse! Now potentially extremely personal and intimate data is now in the hands of a information supergiant! God this makes so angry! If this was anonymous data I would still feel very aggrieved I don't want my medial history including my name spread across the internet for all to see!

Can you imagine what this news is like for a family having to watch a family member suffer from terrible diseases like Cancer only to have that information potentially sold and plastered all over the internet.. it's stressful enough to think about the person let alone that every person and their dog could know your medical history.

Also this could lead to increased benefit fraud in the UK, benefits that are handed out for sick people to help them live a little easier or those or who are incapable of looking after themselves could become victims of fraud because what if this kind of very personal information is stolen and leaked? What then?

Just my two cents.

[aceman67]

Wow... I'm surprised something like this would even be allowed.

It wouldn't fly in Canada, under the Canadian Privacy Act, with the exception of a court order, Google would need written permission from each Canadian to access our records. Hell, the Canadian Government needs written permission to share your personal data between different departments of the government itself (IE Canadian Revenue Agency talking to Dept. of Veterans Affairs, ect.)

Obvious privacy concerns aside, there could be some benefits to this. A supercomputer could collate a database of likely matches for organ and tissue donations, detect medical trends that could lead to early detection of illnesses and preventative treatment.

[Silynn]

Terrible. Now you will start seeing various customized web ads directed at you (and whatever condition). A nice constant reminder that your privacy has been breached.

[Caymen Greener]

I don't see this as much different from Google's normal practices. Check out their Google Drive Terms of Service regarding privacy of data - you own it, but they can do whatever they want with it. Roll that one around in your head for a while next time you dump your account numbers or work data into their cloud without signing a Google Apps for Business/Education/etc contract.

https://www.google.com/policies/terms/

Some of our Services allow you to upload, submit, store, send or receive content. You retain ownership of any intellectual property rights that you hold in that content. In short, what belongs to you stays yours.

When you upload, submit, store, send or receive content to or through our Services, you give Google (and those we work with) a worldwide license to use, host, store, reproduce, modify, create derivative works (such as those resulting from translations, adaptations or other changes we make so that your content works better with our Services), communicate, publish, publicly perform, publicly display and distribute such content. The rights you grant in this license are for the limited purpose of operating, promoting, and improving our Services, and to develop new ones. This license continues even if you stop using our Services (for example, for a business listing you have added to Google Maps). Some Services may offer you ways to access and remove content that has been provided to that Service. Also, in some of our Services, there are terms or settings that narrow the scope of our use of the content submitted in those Services. Make sure you have the necessary rights to grant us this license for any content that you submit to our Services.

[Christopher Halsey]

Honestly I'm not that worried about this.

The only data is from Royal Free, Barnet and Chase Farm hospitals and all patients have the ability to opt-out of 3rd party data sharing should they wish to. If you don't want to have your data shared you have the choice not to allow it.

I think a lot of news outlets are jumping on the bandwagon because DeepMind is owned by Google. The NHS have data sharing agreements with well over 1,000 3rd parties but you don't see those making news headlines.

The data itself is stored and encrypted by a different 3rd party so DeepMind don't have the ability to identify anyone. I believe that is standard practice for NHS data sharing involving 3rd parties. All of this information is already stored digitally anyway, the company they are using is probably as secure if not more secure than the NHS.

Ultimately this is all being done to develop a tool that could help with as much as 20% of all emergency admissions to hospitals, being able to better understand and predict up to 1/5th of emergency admissions to hospitals is huge and if it proves effective it can likely be scaled further to include any number of potential conditions and risks. This could be a very good thing for a lot of people.

[Three of Seven]

I don't see this as much different from Google's normal practices. Check out their Google Drive Terms of Service regarding privacy of data - you own it, but they can do whatever they want with it. Roll that one around in your head for a while next time you dump your account numbers or work data into their cloud without signing a Google Apps for Business/Education/etc contract.

I think you misunderstand, people didn't upload their data to Googles services, Google were just handed it by hospitals.

Honestly I'm not that worried about this.

The only data is from Royal Free, Barnet and Chase Farm hospitals and all patients have the ability to opt-out of 3rd party data sharing should they wish to. If you don't want to have your data shared you have the choice not to allow it.

Opt-out isn't as easy as that in this case, as the New Scientist article states, the Royal Free did not respond to a comment about it, nor does the opt-out remove your from live data.

"Royal Free did not respond to New Scientist’s questions about what opt-out mechanisms are available to its patients. There is already a way for patients to opt out of SUS data collection, but it is not straightforward and involves writing to your GP. But this does not cover live data on admission, discharge and transfer of patients."

The data itself is stored and encrypted by a different 3rd party so DeepMind don't have the ability to identify anyone. I believe that is standard practice for NHS data sharing involving 3rd parties. All of this information is already stored digitally anyway, the company they are using is probably as secure if not more secure than the NHS.

Ultimately this is all being done to develop a tool that could help with as much as 20% of all emergency admissions to hospitals, being able to better understand and predict up to 1/5th of emergency admissions to hospitals is huge and if it proves effective it can likely be scaled further to include any number of potential conditions and risks. This could be a very good thing for a lot of people.

The data involves names, so yeah, you can identify someone! If you're making a tool to help, you don't need the names of people, or if you are going to be using named data, then it should be voluntary. No one got the choice here, their full history was just passed on, with their name attached, they can't opt-out as mentioned above, unless Google are going to create a tool that allows people to remove themselves from this project.

Even if your intentions are good, you can't just force it upon people.

Where are we going to get our next breakthroughs if we don't allow for this kind of innocent data sharing?

Through voluntary means, like all other research and clinical trials.

[Three of Seven]

But why do they need names? That's the problem.

[Caymen Greener]

I see your point, Three (and Jonathan). I just meant that this kind of tactic is not surprising AT ALL by Google. People whine about Microsoft being evil, but it's actually Google and Amazon about which we need to be worried. Those two companies own basically everyone's data - searching, sharing docs, email, and shopping. Bam.

Now this health data, and depending on who gave it to whom, is another concern, but I am a bit naive and trusting - even given my replies herein - when it comes to cloud services and storage.

[Christopher Halsey]

Opt-out isn't as easy as that in this case, as the New Scientist article states, the Royal Free did not respond to a comment about it, nor does the opt-out remove your from live data.

"Royal Free did not respond to New Scientist’s questions about what opt-out mechanisms are available to its patients. There is already a way for patients to opt out of SUS data collection, but it is not straightforward and involves writing to your GP. But this does not cover live data on admission, discharge and transfer of patients."

The NHS didn't respond to the New Scientist but they had released a statement about the agreement with DeepMind, the New Scientist either wasn't aware or chose not to include the following:

"As with all information sharing agreements with non-NHS organisations, patients can opt out of any data-sharing system by contacting the trust's data protection officer."

Which confirms that everyone can opt out of having any of their data shared with any 3rd party. As for the process, that is pretty much the same process with any organisation, you contact the data protection officer. What the New Scientist has written isn't accurate.

The data involves names, so yeah, you can identify someone!

But DeepMind don't have access to the names. The data is encrypted by a 3rd party before DeepMind get any access to it.

If you're making a tool to help, you don't need the names of people, or if you are going to be using named data, then it should be voluntary. No one got the choice here, their full history was just passed on, with their name attached, they can't opt-out as mentioned above, unless Google are going to create a tool that allows people to remove themselves from this project.

The names do need to be part of this at some level, the way the system works is that it identifies people that are believed to be at risk which then gets flagged up so they can be contacted. If there was no personally identifiable information at all then you would just have a system that thinks people are at risk but no-one can do anything about it.

Again no-one was forced to do anything, everyone has a choice. You have the right to opt-out, data-sharing agreements between the NHS and 3rd parties is nothing new.

Even if your intentions are good, you can't just force it upon people.

Through voluntary means, like all other research and clinical trials.

It isn't forced, it is voluntary, people can opt out if they wish.

[McClintock]

Welp, the privatisation of the NHS has officially begun!