LBC Legal Hour: A guide to opting out of NHS data sharing

29 May 2021, 13:28

Daniel Barnett

By Daniel Barnett

This is Barrister Daniel Barnett's guide on how to opt out of NHS data sharing.

A new service from NHS Digital updates the way that your GP surgery shares your GP records with the NHS centrally, for use in medical research and planning of healthcare services. Some people don't like the idea of their GP data being shared.

Anonymised patient data is used by NHS organisations and researchers to help run and improve health services. It's also used to research and develop cures for serious illnesses: for example it was critical in the University of Oxford’s  RECOVERY trial which identified that treatment with dexamethasone improves the chances of survival for people hospitalised with COVID-19.

Any data which identifies an individual is pseudonymised and then encrypted before it leaves your GP practice.

NHS Digital does not collect your name or where you live. Any other data that could identify you, such as NHS number, your postcode or your date of birth, is replaced with unique codes which are produced by de-identification software before the data is sent from your GP to NHS Digital.

How to opt-out

The first thing I want to emphasise is not to opt-out via a website that charges you money. Dozens of these have sprung up, containing terrifying and often inaccurate messaging about what might happen if your data is misused. Don't use them; they may be well meaning, but you can opt out yourself without paying anyone a fee.

The first way, known as a Type 1 opt-out, is to stop NHS Digital collecting your data in the first place. To do that, you have to opt-out with your GP practice. Type 1 opt-outs were introduced in 2013, and if you've already opted out, you don't need to do it again.

To do a Type 1 opt-out (that's the one that stops your GP surgery passing your data to NHS Digital) you just fill in a form - I've included a link to the hard copy of the form (which you can print and deliver by hand) in the notes below.

If you want to do this BEFORE the new software comes in on 1 July 2021, the NHS suggests you send in the form by 23 June 2021, to allow your surgery a week to process it.

If you opt-out later, that's no problem, and your surgery won't share any new information, but the information already passed to NHS Digital in pseudonymised form will continue to be used by them for analysis and research purposes.

The second type of opt out allows NHS Digital to collect your GP data and use it internally, but it stops NHS Digital from sharing that data with any other organisations, such as independent research bodies.

That could be something like the University of Oxford’s  RECOVERY trial, which I mentioned a few minutes ago. Strangely, this isn't called a Type 2 Opt-Out. Rather, it's called a National Data Opt-Out.

Notes

NHS Digitial Transparency Notice - https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#top

Opt-Out - hard copy form - https://nhs-prod.global.ssl.fastly.net/binaries/content/assets/website-assets/data-and-information/data-collections/general-practice-data-for-planning-and-research/type-1-opt-out-form.docx

National Data Opt-Out - hard copy form - https://assets.nhs.uk/nhsuk-cms/documents/Make_and_manage_your_choice_or_your_childs_choice_PDF_224kb.pdf

National Data Opt-Out - online form - https://your-data-matters.service.nhs.uk/