The new NHS Digital scheme for collecting data from GPs

17/06/2021

Update 27 July 2021: The Government has announced they are postponing this scheme. For more details, please see our update. 

The NHS is changing the way they collect patient information from GP surgeries to support health and care planning and research. The scheme aims to reduce work for GPs, giving them more time to treat and care for patients.

You can opt-out of the new data sharing scheme. But you need to do this by 1 September 2021.

Below you can read more about the benefits of scheme and how to opt-out of it if you want to.


What is the new NHS Digital scheme for collecting data from GPs?

GP practices share patient data with NHS Digital to help with health planning and research. This is to find better treatments and outcomes for patients.

NHS Digital provides digital services for the NHS and social care. This includes the management of large health information programmes.

The NHS are bringing in a new way of collecting this data. It’s called General Practice Data for Planning and Research.

The new approach aims to reduce work for GPs, giving them more time to treat and care for patients.

You can read more on the NHS Digital website. It includes a short video explaining the changes.


What will NHS Digital use the data for?

NHS Digital use the data to:

  • improve health and care services through research and analysis,
  • make sure they’re providing the right services,
  • develop health and care policy,
  • introduce public health monitoring and interventions, including ones for COVID-19,
  • research and develop cures for serious illnesses,
  • research the long-term impact of COVID-19, and
  • to look at healthcare inequalities in the population.


What information will be collected by NHS Digital?

NHS Digital will collect the information shown below from your GP medical records. They will start to do this from 1 September 2021. But you can opt-out if you want to. More information on how you can opt-out is shown below.

NHS Digital say they will collect information about:

  • your diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments,
  • your physical, mental and sexual health,
  • your sex, ethnicity and sexual orientation, and
  • staff who have treated you.

They can collect information from your GP medical records created up to 10 years ago.

But NHS Digital won’t collect any personal information that could identify you, such as your:

  • name,
  • address,
  • date of birth,
  • full postcode, or
  • NHS number.

They also won’t collect information about:

  • written notes, such as details of your conversations with doctors and nurses,
  • images, letters and documents,
  • information that is over 10 years old,
  • coded data that GPs aren’t permitted to share by law, like some codes about IVF treatment, and some information about gender re-assignment.


How can I opt-out?

How can I opt-out of NHS Digital collecting my information?

You can opt-out of NHS digital collecting information from your GP medical records. This is known by the NHS as a ‘type 1 opt-out.’

Your care won’t be affected if you opt-out. To opt-out you must complete a form and post, email or hand it to your GP practice by 1 September 2021.

You can find a link to the form on the NHS Digital website. You can find a link to the form under the heading ‘Opting out of NHS Digital collecting your data (Type 1 Opt-out)’ in the 7th paragraph. You can also call 0300 303 5678 and ask for a form to be sent out to you.

You can also use the form to:

  • opt-out for a dependent, if you are their parent or legal guardian, and
  • withdraw an existing type 1 opt-out, for yourself or a dependent.

If you’ve already registered a type 1 opt-out, you don’t need to do it again.


How can I opt-out of NHS digital sharing my information?

You can also opt-out NHS Digital sharing your information, except to help with your own care. This can be information they hold from any part of the NHS, like your GP or hospital medical records.

This is known as a ‘National data opt-out’ or a ‘type 2 opt-out.’

You can opt-out online on the NHS website or by calling 0300 3035678.

If you opt-out the NHS can still share your information if:

  • there’s a legal requirement to, or
  • where it’s in the public interest to, such as helping to manage contagious diseases like COVID-19.

You can find out more about when the NHS can share your information here.

You can read more information about both type 1 opt-outs and type 2 opt-outs on the NHS Digital website.


How will NHS Digital keep my data secure?

NHS Digital say:

  • they collect, analyse, publish and share your data safely, securely and appropriately,
  • they only share data using strict rules relating to privacy, security and confidentiality.
  • approved organisations using your data must have a clear legal basis to do so for health and care purposes, and
  • only the minimum amount of data needed to meet the specific purpose will be made available to organisations.

You can find more information about how and why NHS Digital share your data on their website.


What are others saying about the new scheme?

Some organisations have commented about the new scheme, including:

  • The British Heart Foundation. Their comments can be found here.
  • The Guardian. Their comments can be found here.


Where can I get more information about confidentiality?

You can find more information on our website about:

  • Confidentiality by clicking here, and
  • Confidentiality and information sharing - For carers, friends and family by clicking here.
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