back to article GP surgeries MUST DO BETTER on data handling, says ICO

A number of GP surgeries in England allowed their employees to have unrestricted internet access - thereby increasing the risk of data being leaked, hacked and targeted by viruses, Britain's information watchdog warned today. Officials from the Information Commissioner's Office visited 24 GP practices between April and November …

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Everything you need to know ...

... from a GP, no less: www.care-data.info

If you're unsure as to why you'd want to opt-out, I'll give you one reason: ATOS - the above mentioned link will give you many, many others.

My GP received my opt-out form this morning - my medical records are not for sale.

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Anonymous Coward

Re: Everything you need to know ...

GPs will always have access to your data. It also gets mailed around the country when you move doctor or you get health insurance.

GPs also have photocopiers, so someone could take any data they like already.

Medical records are very useful to help with planning services and checking if patients were put on the correct pathway.

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Re: Everything you need to know ...

I don't mind GPs having access to my data.

What I object to is that data ending up in the hands of advertisers. If you think this won't happen with care.data, you're naive, deluded or a combination of the two.

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Silver badge

Re: Everything you need to know ...

My family's opt-out forms are in the post as well. I'd do it even if there was some benefit to me in sharing my medical records around, simply because of the completely underhand way the government's gone about doing this - opt-out rather than opt-in, no personal information sent to everyone affected, the most disingenuous "information" sheet sent out with the Royal Mail junk mail, no opt-out form provided, and no facility to remove data once it's been uploaded. Scumbags.

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Re: Everything you need to know ...

Anonymous. That´s a laugh. Date of birth, gender and postcode. Even in a crowded city that amounts to an identifier.

Opt-out ALSO given to the GP surgery.

Dissent from secondary use of patient identifiable data

Dear Doctor,

I am writing to give notice that I refuse consent for my identifiable information to be transferred from your practice systems for any purpose other than my medical care.

As you are probably aware, on the direction of NHS England you can now be required to transfer patient-identifiable data from the electronic medical records that you hold to the Health and Social Care Information Centre (HSCIC), via the General Practice Extraction Service (GPES) or other means. This is to be done without seeking my explicit consent and for purposes other than my medical care.

There are substantial concerns about the privacy and confidentiality of any information transferred to HSCIC, not least because NHS England has been given legal exemptions to pass identifiable data gathered by HSCIC between itself and a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. I am also disturbed to note that HSCIC provides access to patient data, some in identifiable form, to a range of ‘customers’ including private companies.

I do not believe that these widely distributed systems with so many potential users and such a wide range of uses, some as yet undefined, can be regarded as secure. And no guarantees can be given as to the future re-identification of pseudonymised or de-identified data; indeed HSCIC admits this is a risk.

I cannot know what specific information my medical records might come to hold but I regard the entirety of my medical records, existing and future, as private and personal.

Please take whatever steps necessary to ensure my confidential personal information is not uploaded and record my dissent by whatever means possible.

This includes adding the ‘Dissent from secondary use of GP patient identifiable data’ code (Read v2: 9Nu0 or CVT3: XaZ89) to my record as well as the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (Read v2: 9Nu4 or CTV3: XaaVL).

I am aware of the implications of this request, understand that it will not affect the care I receive and will notify you should I change my mind.

I recognise the need for health care providers to be paid for services provided to me. I believe the limited information required for such purposes can be wholly anonymised by the provider, before it is released to the relevant commissioning authority. Please ensure that any of my information used for these purposes is treated in this way, and that any other providers are made aware of this mandate, e.g. by forwarding a copy of this letter along with my information when it is passed to them.

Further information for GPs can be found on the BMA website at:

http://bma.org.uk/practical-support-at-work/ethics/confidentiality-and-health-records/care-data

Yours sincerely,

Signature _________________________________________ Date ________________

Information to help identify my records (please complete in BLOCK CAPITALS)

Title _______ Surname / Family name ____________________________________

Forename(s) _____________________________________________________________

Address _____________________________________________________________

_____________________________________________________________

Postcode ________________________

Date of birth ________________________

NHS number (if known) ___________________________________

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Anonymous Coward

Re: Everything you need to know ...

"data gathered by HSCIC between itself and a range of regional processing centres, local area teams and commissioning bodies "

The regional processing centres yes. Area teams and commissioning bodies no. If you are aware of commissioning bodies and area teams that do have patient identifiable data, report them.

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Re: Everything you need to know ...

"GPs will always have access to your data. It also gets mailed around the country when you move doctor or you get health insurance"

Let me tell you how it is from someone who worked in Primary Care (GP surgeries and PCT). Yes, your GP has access to your data. Yes, if you move to a new GP your records get transferred. I don't know why you imagine these two things are profound counter-arguments to centralized record keeping and wide-spread access both of which are vastly different to just your own and previous GPs having access. Furthermore, on an insurance check, no - the insurer does NOT have access to your health records, a GP will be asked to let the insurer know if there's anything on there that would impact the policy. Very much not the same thing. I have actually witnessed discussions between two GPs on whether something needed to be disclosed to an insurer or not and they were trying to tread a balance between patient confidentiality and obligation to the insurer in that instance. If you had a cardiac arrest last year, they'll tell the insurer that (and you should have anyway as you'll already have signed something saying if you had any serious medical conditions or not). It doesn't mean that the insurer gets to look through your records and see that you were pregnant at fifteen or are seeing a counsellor.

Nor do they get to do any of this at any time they like.

I get really tired of people who know fuck all, think they're clever and just like to try and sound smart or score points by attacking what they think are obvious flaws with what they think are great insights.

Your GP / previous GP seeing your records =/= a massive centralized database accessible nationwide and by insurers.

I say this as someone who used to work in Primary Care - you CANNOT trust the DOH to safeguard your privacy. I repeat: they WILL NOT. The original CfH (Connecting for Health) programme where all this comes from had every receptionist at every GP practice in the country able to access your test results and similar and their response to us when we were horrified at this was 'only registered NHS professionals who have signed patient confidentiality agreements have access'. Translation: anyone who takes a job at a practice has signed a bit of paper (one of many). That is the DOH attitude in a nutshell - it doesn't matter if something works or doesn't work or shouts your personal information from the rooftops. What matters is whether there is a bit of paper saying its someone else's responsibility or not.

There are tonnes of horribly overworked people in the middle and lower-tiers of the NHS. People at the coal face struggling with endless waves of ever-aging patient lists, people at the lower levels of the PCT tearing their hair out trying to co-ordinate finite resources and manage all the programmes that exist between practices and stay on top of all the bureaucracy that is dumped on them. But the upper levels of the NHS? Rotten to the core. It's why I left - so many problems that were above the level of access I had to fix.

Anyone who tries to trivialize this like the AC I just replied to did, or who thinks that the DOH will look out for you, is lying or an idiot. Once you get to the upper reaches of the PCTs and higher, they're corrupt as Hell and motivated solely by making sure they get money to their private industry friends and that they have a bit of paper saying a disaster is not their fault.

They will NOT give you any privacy protection that you do not FORCE them to. And the moment you take the whip away, they will try again.

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Re: Everything you need to know ...

" but I regard the entirety of my medical records, existing and future, as private and personal"

They are NOT private and personal - they contain personal information which is confidential - that is something completely different. Also why is your [private contractor providing services to NHS for your care] any more entitled to hold your private and confidential information than the NHS itself? Whilst I disagree with passing on data 'for profit' ; surely using anonymised data collected for NHS purposes for health planning is pefectly reasonable?

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Black Helicopters

Re: Everything you need to know ...

The idea that the NHS can make money from selling data to drug companies is ludicrous. The NHS will make a little money in the short term and end up paying it back, along with drug company profits and everything else, later (to buy the drugs). We should consider nationalizing the pharmaceutical industry, or at least regulating its profits tightly.

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Does anybody currently trust their data in the hands of those antisocial, incompetent bastards known as 'medical receptionists'?

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Silver badge

"Does anybody currently trust their data in the hands of those antisocial, incompetent bastards known as 'medical receptionists'?"

My team were pretty hard-working and unless you've seen what it's like from the other side of the desk, trying to deal with an endless horde of patients with very small teams, shut up. We'd turn our phones on early in the morning and they would ring continuously (yes, I know the difference between continuous and continual) throughout the day. You'd get occasional five minutes here and there when they'd stop.

We divided our reception staff up logically. So we'd have a dedicated line for test results and a receptionist permanently by that phone upstairs. We had some further receptionists upstairs who just did phones so that patients on the front desk in person weren't kept waiting too long by the receptionist taking a call. But it all goes only so far when you're under-resourced and over-subscribed.

Saints? No. Degrees in biochemistry and astrophysics? But "Incompetent bastards" ? I bet you'd last five hours on the front desk before losing it with the eighth patient that morning who insisted they be seen as an emergency patient right away when your GP's only have a small number of emergency slots left and the patient is clearly just trying to jump the queue of people who are sicker but willing to endure and wait.

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Anonymous Coward

I spent Boxing Day afternoon at A&E (first sunny day in ages and I missed most of it!). I had to get some groceries when I got out but I was beginning to think the supermarkets would be shut by then. I was left alone in a bay for fairly long periods and eventually noticed the logged-on computer. I resisted it for probably an hour, during which medical personnel would intermittently come in and use it, which may explain why it was still logged-on when I finally went and Googled Sainsbury's and Tesco, went to their sites and got their closing times. The doctor came back just as I finished. Since I'd been saying I had to go shopping for about the last two hours, I told her said closing times and pre-empted potential repercussions. Except I don't really suppose it would have been me got into trouble. Hadn't occurred to me until now.

I had to go shopping though, even if doing so put my life at risk. Anyway, when she discharged me I thanked her sincerely. Treatment was excellent and the only thing you could fault them for was enabling me to use the computer!

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So the smartcard was in the slot?

The one attached to the long lanyard.......

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Pirate

If you think it is bad now

Wait till all the GP surgeries are being run by G4S, SERCO and Capita

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Re: If you think it is bad now

Actually, circle health and virgin health...

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This problem and others like are caused by one central factor...

... the NHS is run by the government. They are the customer, patients are an inconvenient side issue.

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Anonymous Coward

How to opt out:

To opt out see:

http://medconfidential.org/how-to-opt-out/

and [from page: http://www.nhscarerecords.nhs.uk/faqs]:

http://www.connectingforhealth.nhs.uk/systemsandservices/scr/staff/aboutscr/comms/pip/optout.pdf

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Silver badge

Re: How to opt out:

Those links are for opting out of two separate things - the care.data privacy-disaster-in-the-making that's about to hoover up your entire (current, past and future) medical records, and the Summary Care Record that shares brief details of your ailments and current medication within the NHS. Opting out of the first doesn't affect your medical treatment and is IMO very wise, opting out of the second isn't such a great idea if you want an A&E doctor, say, to treat you correctly.

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Anonymous Coward

Re: How to opt out:

Does "Treating Correctly" in the case of the second form extend to issuing DNR (Do Not Resusitate) Orders if the Summary Care Record indicates that you are not an economically viable individual - e.g. disabled or suffering from cancer?

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Anonymous Coward

Re: How to opt out:

Looks like someone's nobbled the 1st one now:

http://medconfidential.org/how-to-opt-out/

They obviously don't want you to opt-out.

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Re: How to opt out:

As someone who needs daily access to Summary Care Eecords for new hospital admissions - can I second that you DO NOT opt-out of the Summary Care Record bit - otherwise we may miss you are diabetic/epileptic etc ;not give you something in time and your brain is fried - permanently

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Re: How to opt out:

Under phase two, Summary Care Records will be merged with care.data. This will make all records identifiable and anyone will be able to buy the records for a few pounds. Think DVLA, only with your identifiable full medical records.

Banned from any access will be GPs, hospitals and health professionals. It is about selling your identifiable medical records on the open market for spamming and gossip.

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Bronze badge

Re: How to opt out:

Although there's an argument that it's better to have one's records immediately available in case of emergency, this isn't always valid. My own experience, based on a couple of occasions in the last decade when I needed health care at the weekend, is that my treatment at the out of hours centre without my records was rather better than what my GP provided with them.

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Gimp

another organisation that thinks *our* data is somehow *their* data.

What is about these data fetishists that make them need such regular hitting with a clue stick?

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Thumb Down

Oh what brave new world

Aldus Huxley saw this coming.

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Paris Hilton

Have I awoken into and unto an alternative non-illuminati universe?

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Black Helicopters

What is the ICO playing at?

Given that this is both personally identifiable information and also falls into the sensitive information category I can see no basis in either UK law or European law that allows for this to happen without a specific opt in from the data subject.

Even if default opt in was allowed the fact that no attempt has been made to offer an option to opt out goes against everything the ICO has said over many years.

Its also concerning that the current Data Controller at the GP level has no choice but to comply with this. What if the European Court decides its unlawful at a later date? Who will be liable?

This really needs a swift judicial review before it kicks off as once the data is hoovered its not going to be given back or destroyed, its way to valuable.

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Silver badge

Re: What is the ICO playing at?

If you read the link in the article, the Health and Social Care Act 2012 specifically overrides the DPA. The ICO has no say in the transfer, just in how it's handled before and after the transfer.

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