Tuesday, 2 March 2010

Act Now to Protect Your Privacy

This email was sent to me earlier. Although I'm still investigating whether it applies in Scotland, so far it would appear it does. If I find evidence to the contrary I will post an update.
Currently only basic information is held for access by all, for example name, address, date of birth and current medication.

London wide NHS spine upload - ACT NOW

Monday, 1 March, 2010

The Department of Health is currently sending mailshots to people in London and 4 other strategic health authorities, informing them of 'changes to your health records'. These changes are presented as necessary and inevitable but they are not. They shift control of health information from medical professionals to the state and will result in YOUR private details being uploaded onto a centralised system accessible to hundreds of thousands of people - not just doctors.

The changes are presented as being for your own good but they undermine the fundamental basis of the patient-doctor relationship - medical confidentiality - that is absolutely essential if people are to disclose things about themselves for their own treatment and well-being, and for the
wider public health.

Doctors oppose this. Professional bodies oppose it; the BMA believes everyone should be asked for their explicit consent before anything is uploaded ('opt in'). Unfortunately, you are only being given a limited right to opt out and the Department is making that as difficult as it can - for example, it fails to include a copy of the opt out form with the letter!

If you do nothing or fail to respond within the deadline, the government simply presumes your consent. Your personal details and some sensitive
medical information, including your last six months' prescriptions, will be uploaded onto a 'Summary Care Record' (SCR). Once your SCR has been accessed, it will never be deleted from the system. And over time, more and more of your health records will be added to it. As the Prime Minister has already discovered on the Scottish version of the system, the so-called 'protections' bolted on are ineffective - his and others' medical records have already been compromised.

Over two years' independent research shows little evidence of the claimed benefits. But the government is spending millions of pounds bribing Health Authorities to send out these letters before the general election. Maybe because the opposition parties have both said they'll scrap SCR, and build something more localised and patient-focussed instead...


People with serious medical conditions might consider having an SCR, but many already do sensible things like wearing a MedicAid bracelet or carrying a recent prescription. At the very least, talk to your GP at your next regular appointment.

If you want your medical records to stay confidential to your current GP practice, just OPT OUT.

If you are at all unsure, e.g. if you're worried about the security of your health information or you simply want more time to think about it, just OPT
OUT - you can always opt in later if you change your mind.

Please also tell other people - your family, your friends and co-workers. Forward a link to this page. We just don't know how many thousands of people will have their medical information uploaded without their knowledge or consent, but you can help prevent it by spreading the word.


1) If you live in London, the Londonwide Local Medical Committees (LMCs) have produced their own information sheet and a simplified opt-out form:


THIS WILL ONLY WORK FOR GP PRACTICES IN LONDON. If you are registered with a GP practice anywhere else in England, please use one of the following options.

2) You can ask your GP to put a 'stop order' on your record using the opt out letter produced by TheBigOptOut.org (TBOO):


If you haven't received the NHS mailshot yet, this will ensure that your record is marked 'patient refused consent for upload'. We encourage you to
read the rest of the TBOO website, which explains more about other NHS IT systems and how they affect your privacy.

3) If you receive the NHS mailshot, it won't contain an opt out form and the web address given doesn't point at the form either. You don't need to waste your money calling the 0845 number. Be aware that this PDF is heavily biased against opting out, but the opt out form is on page 3:


We also have a Facebook fan page which we'd appreciate it if you could join and invite your friends. We need to spread the word about this latest action. Here's the link: http://www.facebook.com/pages/Protect-Your-Medical-Confidentiality-ACT-NOW/330345503401?ref=nf



Witterings From Witney said...

Actually SR, this is not that new. I opted out in Decembr 2006 and at the time just wrote a letter to my GP requesting that none of my records were entered into the any centrally held system, that a copy of my letter was placed in my records and that my records be endorsed with the 'read' code '93c3 - Refused consent for upload to national shared electronic record'.

This was confirmed by my practice and also that they would contact me as and when the 'system' was 'rolled out' to confirm my continued refusal.

subrosa said...

I realise it's not 'new' WFW but it's now being rolled out it would appear. It's a last chance in many areas for anyone to opt out.

When I first heard about it my doctor said it was only talk. I haven't discussed it again but I will as soon as convenient.

JRB said...

It is my understanding that, here in Scotland; the system will remain entirely within NHS Scotland.

There has been for some time a limit and basic level of GP patient information available to NHS Scotland via the Emergency Care Summery, this lists purely current medication and any allergies.

There is now pressure from the NHS Scotland for GPs to make all patients’ records available to the new computer system being introduced to NHS hospitals.

GPs have considerable concerns about the proposed levels of security for this new system where all patient records will be available.
So much so, that the mater will be debated at the British Medical Association, Scottish conference, on 11 March in Clydebank.

If you have concerns, raise them with your GP. You can opt out, and if sufficient GPs object, the new proposals will never get off the ground.

Weekend Yachtsman said...

afaik this does not yet apply in Scotland.

It's one of the quirks of our legal system that some protections are stronger - DNA handling is another example.

Naturally this won't last, the Righteous will see to that.

But thanks for the tip, I've saved a copy of the opt-out letter and will be sending it to my GP.

subrosa said...

John, many thanks for that thorough explanation. I knew about the Emergency Care Summary by default when I took an elderly neighbour to the local wee casualty, but I couldn't find out much about this. Must admit I haven't had much time to look around and now I have not need.

Many thanks again.

subrosa said...

I'm going to take a copy too Yachtsman and hand it to the doc next time I'm there.

Richard said...

Following half a life on the ocean wave, I worked in database development for the company who have the contract to develop the NHS database.

Their cunning plan was to charge slightly less than European rates to secure the work then outsource it to the third world. Countries like India are full of experienced, intelligent, hard working and well educated engineers who can do this sort of work and make a good job of it.

Unfortunately, the Indian outsourcing agencies had exactly the same idea. They charged for experienced staff while bringing in graduate trainees to do the job or, rather, to not do the job. Add in ridiculous, profit maximising measures like forcing IT staff to share PCs, banning international phone calls and trying to conduct large meetings among dozens of staff using only text based Instant Messengers over the Internet and the whole project became unmanageable.

Outsourcing turned to insourcing. The inexperienced, but nonetheless industrious Indian graduates were relocated from Bangalore to Leeds to avoid the the communications problems. To keep costs down, HM Revenue and Customs helpfully exempted the new arrivals from the income, corporation and NI tax that would normally kick in after 90 days working in the UK so they put all the fully taxed UK contractors in the area out of a job.

It doesn't matter how hard you work or how much unpaid overtime you do. You're not going to develop the biggest and most complex Oracle database in the world if you're 22, you've just finished a business studies degree, you've never actually used Oracle before and your employer wont even send you on the Oracle 101 course for new graduates.

I worked on a database developed by one of these firms. It was used to supply computer hardware to customers all over the world. The exchange rate calculations were not done properly. The customers were buying kit off my employers for less than cost price that my employer paid the manufacturer! A loss was made on every sale.

Would you trust your life to a computer developed by these people? I would not and that is why I had my data removed from the spine some time ago. Privacy concerns were of secondary importance. If the database spits out A+ instead of B+ when asked about my blood group, I could end up with something akin to red porridge in my veins. No thanks.

Witterings From Witney said...

Forgive my cheek SR, but if Richard returns might I put in a request for him to email me through my blog?


subrosa said...

Jings Richard, what an insightful comment. Very concerning for the average person too.

Did you see WFW's request? Could you please email him through his blog?

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