I Think Someone’s Watching Me

Someone may be watching me. I just can’t shake the feeling.

We’re all up to date on the National Security Agency (NSA in the U.S.) and the Government Communication Headquarters (GCHQ in the UK) spying on all us nice and docile citizens. They retrieve and store data on our phone calls, text messages, emails, internet browsing, website viewing (they know you’re reading this right now). They do this with the help of telecommunication and other private companies: Verizon, Vodafone, British Telecom, Google, Amazon, Microsoft, Facebook, Yahoo!, to name just a few. We’ve learned that the NSA and GCHQ have even hacked into the backbone of the internet, creating backdoors and goodness knows what else to compromise the very security that, for example, all internet finance depends on. All those prime number encryption algorithms don’t do much good if the spies have direct access ( See New York Times  and Scientific American).

Of course, it’s not just governments collecting and storing my life. All those great companies started in dorm rooms and garages years ago are selling parts of me every day. Facebook, Amazon, Google collect and sell my metadata to anyone out there with deep enough pockets. And those unknown companies and organisations with deep pockets have accumulated huge databases of our private and personal information. I bet you haven’t heard of “data brokers.” I hadn't. They buy and sell collect and story information about us. For example, Acxion, Inc has detailed dossiers on 96% of Americans and 500 million people world wide. For each of these people it stores 1500 data points covering people's net worth, shopping habits and contact information. (See New York Times and Abine)

What do we want? Privacy! When do we want it? After we checked our Facebook status and bought that book!!

Here in Britain the police have for years infiltrated green activist and university student organisations as a matter of course. At least two copper were undercover for years and fathered children with activists. When their tour of duty was up, they simply disappeared. Tough to know who your friends are these days, not to mention who your daddy is. George Monbiot gives a quick rundown of police undercover surveillance:

Among them were the British campaign against apartheid in South Africa, the protest movements against climate change, people seeking to expose police corruption and the campaign for justice for the murdered black teenager Stephen Lawrence. Undercover officers, often using the stolen identities of dead children, worked their way into key positions and helped to organise demonstrations...Some officers illegally used their false identities in court.

The British police have 8000 CCTV cameras all over Britain and to date capture 26 million images each and every day of people like you and me. The police estimate that by 2018 they can increase that number to 50 to 75 million. The automated numberplate recognition system (ANPR) has 17 billion photos in its archives. If you’re on the highways, they know it, and pretty much know where you are going and where you’ve come from.

Not to be outdone, the Tory/Liberal Democrat government wants the NHS to join in the fun. 26 million households in England will be getting the Better Information Means Better Care leaflet telling us of the exciting new development of collecting all our confidential medical records and putting them in one place, the Health and Social Care Information Centre (HSCIC) via the General Practice Extraction Service (GPES). The information to be extracted will inlcude our NHS numbers, date of birth, postcode, ethnicity and gender. As I understand it, my GP will be required to transfer my confidential information (once transferred my “information” becomes “data”). And what do I have to do to help? Well, absolutely nothing. The leaflet helpfully point out: "If you are happy for your information to be shared you do not need to do anything. There is no form to fill in and nothing to sign. And you can change your mind at any time."

I can, of course, opt out by finding the right form, filling it in and giving it to my GP. This is nudge nudge strategy. Set the default option as “do nothing” to “participate” and most people will do exactly that, nothing. Tory and Liberal Democrat ministers will then announce the programme is a great success because we all joined in. It must be true, therefore, that all along we wanted our confidential medical information be collected and sold. Of course, not opting out is not the same thing as joining in, but never mind.

Obviously, some good will come of this. Researches will have access to vast amounts of data and by pooling and analyzing that data they will learn more about health, disease and treatment in England. There’s a rub, however, and as always it’s about money and privacy. The database will be available to “approved researchers” and they don’t just include my GP, NHS folks and university researches. No, for a fee private insurance and pharmaceutical companies, for example, can also have access to my confidential medial information. That’s right, someone is going to make some of money off my getting cancer. And once the private firms have the data they can use it in any way that benefits their interests. I’d bet my own personal metadata that no Tory or Liberal Democrat government minister will have any influence over data usage by private firms once that data has been purchased.

It’s now being reported that the police and other government bodies will have “backdoor” access to our medical records in the database. At present the police have to find our GP who hold our medical records and then go to open court for a disclosure order. When the new database is in place the police will simply have to go to the NHS information centre and ask for the information.

Of course, as with all the spying, police infiltration, data collection, data selling, data storing, image capturing and archiving, there is absolutely nothing for me to worry about. I’m assured that my personal information, well most of it anyway, will be “scrubbed” of “personal identifiers,” but as is always the case, probably not enough to make me completely disappear. Even the guy selling the programme on behalf of the government told The Guardian there is a slight risk:

Mark Davies, the centre's public assurance director, told the Guardian there was a "small risk" certain patients could be "re-identified" because insurers, pharmaceutical groups and other health sector companies had their own medical data that could be matched against the "pseudonymised" records. "You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk," he said.

Right. As John Naughton said in the Observer: “All of which makes one wonder what Davies has been smoking.”

Concerning the scrubbing of identifiable data, Pulse has also discovered that requests “for identifiable patient data have been approved more than 30 times since April by the group of independent experts which will oversee access to confidential records uploaded to the controversial care.data scheme.” I guess the best thing to say is “watch this space.” 

They – government ministers, spies, private companies, the police – keep telling me that no one is, at least not yet, collecting my “content” but just my metadata and thus I have nothing to worry about. But anyone who can watch TV or listen to the radio or read a news item knows that metadata is the name of the game. Why the hell do you think the likes of Facebook and Google sell my web and search activities. By pooling data and analyzing that data they can probably tell my wife a thing or two about who I am and what I get up to. Through analyzing metadata the spies and the advertisers can construct a detailed and accurate profile of who I am, what I do and with whom I do it.

Pulse: At the Heart of General Practice Since 1960, asked GP’s this question:

Do you plan to personally opt out of the care.data scheme?

The results:

• Yes – 41%
• No – 43%
• Don’t Know – 16%

GP’s who are opting out of care.data have said that they have “concerns over the safety of the data and the way the scheme was to be conducted...”; that patients might be misled about the “confidential nature of the data extraction”; that it’s not “clear to whom the data may be sold.” (From the above Pulse link)

Question: Who owns my private medical records? I thought it was me, but perhaps I am wrong. In any event, my records will be sold and no one's going to deposit money in my account after the sale.

Well, ridiculously, I may make a stand this time! It’s ridiculous because I haven’t made a stand on anything else. I haven’t stopped using Gmail or Google searches, Facebook, Amazon, my mobile phone, browsing the internet, etc. But I just may refuse to allow my confidential medical information being sold to private insurance and pharmaceutical companies, and God knows who else.

If you want to consider opting out yourself, go to medConfidential. Remember, this is not an opt in programme. You must opt out or your private medical records will be included in the new database. I’ve printed out the dissent form and letter to give to my GP, and just might do it. Only, she’s great and over worked and when I dump the form on her desk at my next appointment she’ll have more work to do. Life! Or, I could just say, what the hell. I’ll be dead before any of this matters.

Where’s George Orwell when you need him?

Copyright © 2014 Dale Rominger