Fax Your GP: quick opt-out from insane NHS plan to sell your medical records

Originally published at: https://boingboing.net/2014/02/18/fax-your-gp-quick-opt-out-fro.html

The NHS records scheme only applies to England. Health is a devolved power and the parliaments in the rest of the UK do not have any schemes like this in place.


typo nit: MagdalinSKI

Cheers mate! Much appreciated.

Another thing to actually believe – how will we know our data is secure? – that they will honour our requests.

But seriously… How can NHS Scotland and Wales keep the companies out, but not England?

Another nail in the coffin for the Union as far as I can see.

Ours was much easier than this ? - we went and told the receptionist to take us off the list, she gave us a form to sign and date, job done

We have left the country so it’s hard to just visit the GP to opt out. They keep adult records for at least 10 years and children’s records until they’re adults. That being the case, I felt it was my duty to opt my kids out so private companies don’t get the records. It appears that if you don’t opt out now, you’ll never have the chance in future - but my kids are too young to send faxes to doctors. It seems crazy.

It makes me sad that to opt out I have to force more work on my surgery when they’re already over worked and drowning in red tape.

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Ha ha you crazy fools! What makes you think they will pay attention to your faxed form? Who will you have arrested if they do ignore it, and they will.

Please be aware this opt-out is very broad and has bigger consequences than just excluding you from marketing data. As is it opts you out of linking your GP records, hospital records and central NHS registry records. While they are currently unlinked this may, in the future, be detrimental to your NHS provided medical care. Opting out of this will have negative effects on first line care as emergency services will not have immediate access to your doctors records, which can include vital information such as drug allergies, existing conditions and current prescriptions. Opting out removes a safety system and could be life endangering for those with drug allergies or some medical conditions. Currently there are care problems resulting from the lack of important GP data at hospitals, these systems where originally designed to address this. Marketing this data is an unfortunate corruption of this use.

Please also be aware than many big data based medical approaches, such as the national cancer registry depend upon this data to function and have a positive effect on overall cancer treatment and patient care.

I agree the idea of companies looking at my poorly anonymised data for marketing reasons is repellent, but unfortunately this opt-out covers more than just stopping this. A more finally grained approach to this is required.

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I believe that you can opt back in if you want to later.

Doesn’t help you much in the E. R., I know.

Imagine what it will be like for Wales and Northern Ireland if Scotland votes for independence this September. England’s political control over the UK will become even greater.

It’s true that fully anonymised data is very useful for medical research.
But I have reasonable concerns that the proposed new system will not be fully anonymous. I am not alone in this. The whole scheme has just been postponed.
“The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns in recent weeks.”
It is incorrect to claim that care.data will enable individuals to receive better connected health care services, as this is not what the scheme aims to achieve.
I see this as a big failure for medical research. A properly anonymous scheme would have been feasible, and fairly robust. Instead, whatever trust people had in NHS data collection has now been shredded. Either the organisers had no idea what ‘re-identification’ means, or they really did just want to flog the data without anyone noticing.

I fully agree with your concerns about the anonymisation of the data, unfortunately I’m not sure that such a detailed data set can be meaningfully anonymised without losing research value.

I think you may be mistaken in stating aim of the system is not to enhance patient health care. From the NHS site.


2nd Paragraph

“Summary Care Records are being introduced to improve the safety and quality of patient care. Because the Summary Care Record is an electronic record, it will give healthcare staff faster, easier access to essential information about you, and help to give you safe treatment during an emergency or when your GP surgery is closed.”

Greater, but not much greater. Between them, Wales, Northern Ireland and Scotland only contribute 98 MPs - England contributes 502. The other countries are, in the interests of vaguely reflecting where the majority of the population lives, totally outgunned. Losing Scotland’s 52 MPs only amounts to the loss of a little more air out of an already flat tire.

If you’re interested in constitutional reform, what appeal does a no vote have? We’re not talking about Electoral Reform after the A/V referendum, I doubt we’ll be talking about the constitutional reform that many in the UK want (and the UK probably needs) in the event of a no vote in Scotland: the status quo will have been validated, but the status quo will not continue.

If there are two things that seems to unify Labour and Conservatives, it’s that Scotland can expect to see the system that determines its budget replaced with a ‘needs based’ system that will make current services and policies unsustainable, and that there will be greater centralised decision making from Westminster.

I’m hoping that a Yes vote will lead to the UK having the conversation it needs to have so that its constitution and political structure is fit for the 21st century and its people.

[Edited down because the previous version was really far too long]

I believe Wales has a system like this already in place, but it’s securely anonymised rather than pseudonymised.

NI’s going to be weird- will the Unionist population there want union with rUK or with Scotland?

Now all I need is a handy website to find out who and where my GP is. I honestly don’t have the faintest idea.

I saw an open letter about this from Sarah Wollaston (Conservative MP for Totnes, former GP)

Just sharing for info, not stating agreement with her.


Then they should do it properly. You can change your mind at any time. If they sort out the concerns, I will opt back in.

Flogging my (weakly anonymised, trivially jigsawed) peak flows to a meerkat in a dressing gown is just bullshit.

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