New National Health Service database and your GP records

What you need to know and your rights

From 1 September 2021,  the Government has Directed NHS Digital to collect data from your and your family’s GP records. Patient rights organisations are concerned that our personal data is effectively being ‘grabbed’ by the Government and that this may be accessed by third parties, including the pharmaceutical industry, further that some of this data can actually identify individual patients.

The data that is being collected includes:

  • “data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health” (more details)
  • “data on sex, ethnicity and sexual orientation”
  • “data about staff who have treated patients”

We want to ensure you know you rights and importantly that You can opt out if you wish.

Deciding to opt out will not affect your medical care, or the information that is available for your care.

How to opt out

Step 1.

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 this form and then giving/posting it to your GP. This form allows you to include details for your children and dependents as well.  You need to send your form to your GP practice a week before 1st September 2021.

GP_Opt Out Letter_Type 1Opens or downloads a document

Step 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.

You will need to send the form by email or by post:

By email to : enquiries@nhsdigital.nhs.uk

By post to:

National Data Opt Out
Contact Centre
NHS Digital
HM Government
7 and 8 Wellington Place
Leeds
LS1 4AP

  • If you have an adult dependent for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.

You will need to post this form and any required photocopies to one of the following:
By email to : enquiries@nhsdigital.nhs.uk
By Post :

National Data Opt Out
Contact Centre
NHS Digital
HM Government
7 and 8 Wellington Place
Leeds
LS1 4AP

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. So, if you want to opt out of both processes, you need to complete both Step 1 and Step 2. and complete both forms that are relevant for you, plus any other forms for your family members.

If you don’t have a printer

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 read more about peoples concerns on the following link.

https://www.opendemocracy.net/en/ournhs/is-government-telling-us-truth-about-gdpr-and-your-nhs-medical-data/

You can find out more about NHS digital using the links below: