UK Residents: Your medical information for sale

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36 Replies - 2618 Views - Last Post: 14 February 2014 - 02:22 AM

#1 Salem_c   User is offline

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UK Residents: Your medical information for sale

Posted 13 February 2014 - 12:07 AM

Visit http://medconfidential.org/ to read more.
This is a new database, that has nothing to do with your personal care.

It's all about data mining for anyone who wants to buy it.

You cannot stop your information being uploaded, all you can do is request that it is "made anonymous".

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#2 Ntwiles   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 12:12 AM

Assuming that patients can in fact opt to to remain anonymous, I see no issue here. This is data that could potentially save lives and absolutely should be freely distributed.

This post has been edited by Ntwiles: 13 February 2014 - 12:14 AM

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#3 Salem_c   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 12:43 AM

It should be anonymous by default!

If you're so open, just post all your data here or on facebook.
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#4 jon.kiparsky   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 12:51 AM

Quote

Assuming that patients can in fact opt to to remain anonymous, I see no issue here. This is data that could potentially save lives and absolutely should be freely distributed.



So the collective good outweighs the individual good, and this is obvious? I'm afraid I'm not so confident that I know what's best for my fellow citizens as you are.
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#5 Ntwiles   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 12:56 AM

View PostSalem_c, on 13 February 2014 - 02:43 AM, said:

It should be anonymous by default!

If you're so open, just post all your data here or on facebook.


I had my gall bladder removed a few years ago. I just had a physical last month. I got a flu shot and opted to get checked for a few strains of STI just in case. I'm currently taking over the counter allergy medication. I'm allergic to penicillin. Anything else you want to know?

View Postjon.kiparsky, on 13 February 2014 - 02:51 AM, said:

Quote

Assuming that patients can in fact opt to to remain anonymous, I see no issue here. This is data that could potentially save lives and absolutely should be freely distributed.



So the collective good outweighs the individual good, and this is obvious? I'm afraid I'm not so confident that I know what's best for my fellow citizens as you are.


Absolutely not. But - still assuming you can in fact opt to remain anonymous - please explain what detriment this new system is to the individual good.

This post has been edited by Ntwiles: 13 February 2014 - 12:59 AM

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#6 Salem_c   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 01:49 AM

Your name and address so I can sell you some snake oil would be nice.

Genuine medical research only needs aggregate statistical information.

Only corporatists looking to sell you something need names and addresses.
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#7 Ntwiles   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 02:07 AM

I agree on both points, but I'm curious as to why you think either of them are relevant to this conversation.

From the NHS England website:

Quote

Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked, a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.

Source

Now that our discussion has been re-seated firmly back into the realm of fact, please explain your issue with providing ease of access to anonymous data for the betterment of our scientific community.

This post has been edited by Ntwiles: 13 February 2014 - 02:10 AM

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#8 belgarion262   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 02:32 AM

Anonymous data for research and the like? Good

Having to opt-in to be anonymous? Bad


That sums up my thoughts.
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#9 Slice   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 04:57 AM

Everytime an issue comes up with privacy or personal information, no matter where in the world it is, it makes me care about it a little less. Without fail there will be a big outcry about it, and then no matter what the outcome, about 6 months later everyone will have forgotten all about it.

I'm with Ntwiles on this one though. Even if you don't opt-out, "This new record will not contain information that identifies you." So someone, somewhere, knows that a 24 year-old male (me) broke his wrist twice in his teens, and dislocated his knee.

Hell, if they wanted my name and address I'd probably opt-in to give it. What are they going to do? Send me letters asking me how my knee is feeling today? The media that builds up these "Act now to prevent this!" websites make us think there is an evil henchman sat behind the scenes somewhere, doing an evil laugh while stroking his evil cat.

I don't think the world is as synical as everyone thinks it is.
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#10 belgarion262   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 05:06 AM

People enjoy their conspiracy theories.

There are number of factors as to why, but probably one of the most important ones in this instance is that, paradoxically, it gives people a sense of control. People are also hardwired to value negativity over positivity, meaning they're more likely to believe a bad event then a good one. Usually it makes sense, it's like expecting the worst, so that you are better prepared.
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#11 depricated   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 05:38 AM

Ya, I don't see the problem here.

The propegation and free flow of information is invaluable. Linking to postal code is sufficient for providing geographical context. I'm not sure what the value in providing your NHS number is other than ensuring you don't get entered twice into the database - sort of a primary key I guess. DOB provides age context, gender provides gender context. It's not like they're handing out cell phone numbers and saying "THIS GUY HAS RESTLES LEG SYNDROME! SELL HIM SOME DRUGS!"

"Corporatists" (the fuck is this, Oceania?) could use the data to target specific areas. If they see incontinence on the rise in one particular postcode, they might elect to advertise their adult diapers more heavily in that area.

I don't see any moustache twirling going on here.
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#12 belgarion262   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 07:12 AM

No but you see, it must be the Illuminati working with the Free Masons, who want to kidnap all the people with restless leg syndrone! There want to hardness the power of jiggly legs to power a machine that will help them take over the world!
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#13 jon.kiparsky   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 08:26 AM

A few things seem not to have become clear to y'all.

First thing: we have computers now. You many have heard of these things, yeah? What are computers really good at? Well, among other things, they find patterns. True story - recently, I had to work on Facebook integration for a website I was working on. To do this, I had to create a Facebook account. I never had and never wanted an account on Facebook, so I figured at least I could keep it at arm's length: I created the account using a name that isn't mine, with no biographical information related to mine, and using an email account that I hadn't used in ten years, which also does not have my name anywhere near it. Within an hour this Facebook account was seeing suggestions that I connect with people that I know. This is a trivial example of a what happens when a corporation just leaves their computers running. Nobody had to even try to piece together that this new account was mine. It just fell out of the data.
Do not think that you can "anonymize" information if someone has sufficient motivation to extract identity from it. The very fact that makes this information useful - that is, that there are real statistical patterns in it - will allow those viewing it to extract a lot more information than you think. Considering the amount of information you already make public, this essentially makes all British medical records public information, if anyone wants the information badly enough to get it.

Second thing: divulging any information gathered in the course of treatment is a violation of the Hippocratic oath. The privacy of all patients is to be respected, according to this oath, which as far as I know is still the basis for the standard by which the proper conduct of the physician is defined. There is no provision for "anonymizing" information in this oath. It doesn't say "I will not reveal the name of the patient I treated, but all other information is fair game." In fact, one of the only things a physician can reveal about their patients is their name. What happened to that patient is, according to one of the oldest professional standards standing, none of your business.
So if you're a physician, participating in this scheme is a violation of your oath.

Third thing: medical data is held to be fundamentally confidential for good reasons. The physician, in the course of practice, learns things about the patient that even the patient does not know, about the most intimate detail of that person's existence.Some examples: In recent history, homosexuality was considered shameful and private information, and many gay people still hold their sexuality as non-public information, whether for professional or personal reasons. This information might well be part of medical records. A drug addiction is medically relevant information that a doctor should know about, but many people with addiction do not wish that information to be made public. A terminal diagnosis or long-term debilitating condition is information that the patient clearly should be in control of, and allowed to reveal only when and if they choose.
So this isn't just about sprained knees and restless leg syndrome.


There are two issues at play here. One is whether this actually reveals information that people might want to keep private. I believe it's likely that it does. The capacity of machines operating unsupervised to extract information today is really tremendous. I would have to look a lot closer at how this data is structured, but policymakers who haven't spent time looking at big data and machine learning techniques are likely to have far more confidence in anonymization than could ever be justified by the facts. What surprises me is that people who should know better don't seem to be aware of this. What surprises me even more than this is that people working in technology seem to be blissfully unaware of the tendency of data to be compromised. It's almost like you all have not read a newspaper in the last two decades.

The second issue is whether privacy matters. I believe it does - people have the right to reveal of themselves what they choose, and when they choose. Others might not believe that, but privacy has been a protected issue for long enough that convincing arguments against it are required. The sanctity of inner life has been a core value attacked by the worst people in history, and defended by the best. Turning away from that tradition is not trivial, and arguments from "I don't care, therefore you don't care" are simply fatuous. You might feel that your sprained knee is not something you care about keeping from the world, and of course that's up to you, and of course that has nothing whatsoever to do with anything.
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#14 modi123_1   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 08:36 AM

Just some reference on how anonymous isn't quit that..

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“Researchers … found that just four points of reference, with fairly low spatial and temporal resolution, was enough to uniquely identify 95 percent of them.
cite1

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Boom! But it was only an early mile marker in Sweeney's career; in 2000, she showed that 87 percent of all Americans could be uniquely identified using only three bits of information: ZIP code, birthdate, and sex.
cite2


I would agree with jon - privacy matters, and should matter. Codifying all of your data into a medical surveillance system is not something to greet with arms wide open, and at the bare minimum it is not an action you should assume all folks want to partake in.
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#15 jon.kiparsky   User is offline

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Re: UK Residents: Your medical information for sale

Posted 13 February 2014 - 08:52 AM

View Postmodi123_1, on 13 February 2014 - 10:36 AM, said:

Quote

Boom! But it was only an early mile marker in Sweeney's career; in 2000, she showed that 87 percent of all Americans could be uniquely identified using only three bits of information: ZIP code, birthdate, and sex.
cite2


This reminds me of a true story about low-tech data mining. When I was in college, there was an "anonymous" survey distributed about academic practices, including stuff on cheating, honesty in departments, and so forth - questions asked both "have you" and "has someone you know" committed this, that or the other violation. Students were asked to identify themselves by major, year, gender, and ethnicity. The linguistics department at the time was pretty small, and we noticed that most of us would be uniquely identified by that information. We made this known, and it turned out that this was true for most of the smaller departments on campus, and we were further able to show that the students who would be uniquely identified were precisely those in the standardly protected classes - specifically, minorities and women. This should have been obvious (there were fewer minorities and fewer women enrolled in most programs at the time) but it turned out to be hugely embarassing for the administration, since my college liked to maintain a pretty liberal image.
The survey was quietly withdrawn.
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