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Two weeks to tell government not to share your private medical data
by Lib Dem team on 5 June, 2021
The Government is quietly pushing through a new rule that will force GPs to share our private medical data with third parties for research. The medical data of millions of patients will be very valuable – and useful – for research, but there are serious concerns and you only have until 23 June 2021 to opt out.
Although the data will be anonymised, it will be possible to reverse the process, or to simply figure out who you are from your postcode, ethnicity, gender and other details.
To opt out, you have to print and fill out a form and give it to your GP before 23 June 2021.
There is an online NHS form that looks like it will opt you out. IT WON’T. The online form only relates to data from hospitals and clinics, not from your GP. You need to send a paper form to your GP. This is explained in the opting-out section of this page.
If you don’t have access to a working printer, you can ask the NHS Digital Contact Centre to post you the forms you need. Their phone number is 0300 303 5678 and they are open Monday to Friday, 9am to 5pm (excluding bank holidays), or you can e-mail enquiries@nhsdigital.nhs.uk any time.
You can find out more about the scheme here.
The official NHS guidance is here.
And there’s an article from the Guardian covering the issue here.
If you are happy for your medical data to be shared sort-of-anonymously for research, that’s fine – you need not do anything. If you want to stop this happening, you must tell your GP by 23 June 2021 by sending them a completed form.
If you’re not sure, you can opt-out now and then opt back in at a later date. It doesn’t work the other way round though: if you don’t opt-out by 23 June 2021 then all your medical data from birth to whenever you opt-out in future will be shared forever and there’ll be nothing you can do about it.
Cllr Iain Roberts said “The Government should pause this scheme to allow people to receive and consider the information we need to make an informed decision. It might turn out that this is a good idea with benefits for medicine and low risks to us, but we just don’t know. The way the government is keeping this quiet and making it difficult to opt-out is worrying – we need openness and transparency on these plans.”
15 Comments
This has been kept very, very quiet.
Someone told me about it a couple of days ago and my opt-out form is already on its way to the GP.
More stealth by our government. It should be opt-in not opt-out.
I have no objections if its anonymous. I have recently had some tests and a procedure at Wythenshawe Hospital and was asked to consent to results from that to be used for research. If my (anonymous) data can help in some way, why not?
Of course it’s good that research is done and information about our health issues can help with that. However this is much more sinister, several private health institutions are after our details and this is definitely an opportunity to undermine the NHS. The fact that it’s been kept so quiet is worrying and personally I wouldn’t trust this government at all. My form will be in my doctors surgery tomorrow.
You are naïve Robert. Not all organizations are altruistic. Just imagine if insurance companies were to gain access to your medical history. It could affect your family as well as yourself.
As it says above, once in you can’t come out. Surely, it makes sense to opt out, see how things progress and then opt in if you are subsequently convinced your data will be treated with respect as well as being useful.
Thank you for this, very helpful indeed. Typical of Johnson and his idiot cronies. They know the price of everything and the value of nothing. I’ll be opting out. Shame we can’t just opt out of this government.
I expect our GP’s surgery will be swamped with forms. What assurances have we that they will deal with them when we already know that we cannot get a doctor’s appointment without 3 weeks notice. I have to assume that the GP is set up to deal with these requests?
If the data is anonymised then how will it be possible to reverse the process? Please explain. This is just scaremongering.
The surgery will upload ALL the data to a central repository, including personal details, for all that have agreed to it. Someone in government will then determine what is “anonymous” and pass that part on to their own research establishments and also to any other private company that they can sell it to. At any point in the future, this or any future government can change the rules and pass on whatever they deem necessary from that central repository, including your personal details. Be worried.
Is it best to print and fill out the letter from the mycouncillor website or to complete the Type 1 Opt Out form from the GP surgery?
Also, if completing the Type 1 opt out form from the Surgery, when selecting my choice, should I tick the box or mark it with an X ?
Hi Edward – either form should be fine, and any mark should be fine to select your choice – tick or cross.
Thank you.
Should I also send a GP Type 1 Opt Out form to my Previous GP’s as well as my current GP ?
Hi Edward – I’ve not heard any suggestion that you need to contact previous GPs, so I think you’re OK just telling your current GP.
I found the following, which maybe helpful.
https://nhsdatasharing.info/
https://www.nhsdatasharing.info/optout3db.doc
https://www.nhsdatasharing.info/optout3db.pdf