Don’t give away your data

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We reproduce this from MedConfidential

How to opt out

Choices available to you in the new GP data collection

None of the choices below will affect your medical care, or the data that is available for your care. A longer and different process is required for families with children or other dependents, which we walk you through.

If you live in England and want to stop your GP data leaving your GP practice for purposes other than your direct care, you can do so by filling in and giving or posting the form in step 1 to your GP:

1)  Protect your GP data: fill in and give this ‘Type 1’ form to your GP practice [PDF] [or MS Word] – this form allows you to include details for your children and dependants as well. This is the most urgent step; the deadline to get your form to your GP practice is 23 June 2021according to NHS Digital.

2)  If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (e.g. for “research and planning“) you must use this process:

  • If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.
  • If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.

There is no deadline for step 2, the National Data Opt-out (i.e. your non-GP data), but the sooner you do it, the sooner it takes effect. The National Data Opt-out will not stop your GP data being extracted by the new GP data collection.

N.B. If you opted out of in 2014, then you shouldn’t need to do anything now. As most people did both a ‘Type 1’ opt-out and what is now a National Data Opt-out, you can check your NHS Digital opt-out status online at NHS Digital. Your GP opt-out status will probably match the opt-out status shown there; although if you’re not sure, giving a a ‘Type 1’ form to your GP Practice now doesn’t have any risk.

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, if you prefer, you can e-mail with your postal address and we will post you copies of the paper forms, for free, no questions asked. If you don’t have e-mail, you can text your address to us on 07980 210 746. If you can afford to make a small donation to support us in offering this service to others, we have a donation page. We will, of course, only use your details to send you the forms you want and will delete them as soon as we have done that. (medConfidential is registered with the ICO to process personal data in this way.)

As new information or actions that you can take become available, we inform people via our mailing list:
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We will not share your details with anyone else.

GP data: As your ‘front door’ to the NHS, your GP holds the lifetime history of your GP care; all of your prescriptions, your diagnoses, your ailments, your tests and referrals – and the context for them all as well. You have the choice whether information from your GP record is copied outside of your GP practice for purposes other than your direct medical care. (This choice was created in 2010, and is between you and your GP only.)  Your GP treats you; other parts of the NHS tend to treat ‘a condition’.

Other data: The National Data Opt-out is intended to cover your data being copied from all other care providers, and NHS Digital, for purposes beyond your direct care. This choice will in time cover all hospitals, etc. but can at present only be set via NHS Digital, the option to do so via your GP having been withdrawn in 2018. (N.B. The National Data Opt-out does also cover your data leaving bodies such as Public Health England, which used to run the database of every patient who has ever had cancer, as well as other databases.)

Opting out: While in 2014 you could opt out of secondary uses (i.e. non-care uses) of your NHS data with a single form, now you must use at least two different processes – three, if you have children or dependents.

Re-use of your records beyond your direct medical care:
Choices not available to you

Exercising the opt-out choices linked above will protect you from some risks – certainly more risks than if you do not express those choices. Both opt-outs do precisely what the Department of Health claims they do, but they do not protect you as they could.

These choices do not, for example, currently:

As of 2021, some NHS bodies’ actions are still not compliant with the 2018 Data Protection Act, which implemented the General Data Protection Regulation (GDPR) into UK law. And several of the important safeguards promised in 2014 are still entirely missing:

  • The commercial re-use loophole remains open;
  • No ‘single-strike’ penalties are in place;
  • No significant contractual sanctions have been applied, despite serious breaches;
  • No Regulations have been laid to guide the Confidentiality Advisory Group;
  • NHS Digital is still releasing huge volumes of linked, individual-level patient histories rather than using safe settings;
  • The sole independent advisory group on collecting GP data – GPES IAG, the group that first raised concerns about – was abolished without a full replacement.

The best way to have confidence in how your wishes will be respected, and in how your data will be used next month, is to see how your data was used last month. This, for all the reasons we list above, remains impossible.

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