The NHS and Your Data

You may have recently heard about the National Data Opt-Out. There has been a lot of information and we appreciate it can be confusing so have explained the options below to help support you make an informed decision. You can also find more information on the NHS Digital website. NHS Digital are part of the NHS who collect, process and make data available to improve everyone’s health and care.

Data sharing with the NHS is not new. For example, Type 1 Opt-outs were introduced in 2013 for data sharing from GP practices. However, the system NHS Digital currently use to collect data needs updating and as a result, you are being asked whether you wish to opt out. This is called the National Data Opt-out.

Why does the NHS need data?

The NHS uses your patient data to support planning and research at both a local and national level, such as deciding where to provide new health and care services, or as with the Covid 19 pandemic, informing guidance, government response and vaccine planning.

What are my options?

As a patient, there are two options you can choose to opt out of. Your individual care will not be affected if you opt-out using either option.

  • Type 1 Opt-out – GP sharing your data with local NHS organisations and NHS Digital for planning and research purposes

With the exception of your own care, if you do not want your GP to share your data for planning and research purposes, you can opt-out by registering a Type 1 Opt-out. This prevents your data being shared with local NHS organisations and NHS Digital for planning and research purposes.

  • National Data Opt Out (previously Type 2 Opt-out) – NHS Digital sharing your data for planning and research purposes

You can also register a National Data Opt-out. NHS Digital will collect data from GP practices centrally and share your data with approved national bodies and local health and care organisations for planning and research purposes. If you choose to opt out, this will prevent NHS Digital from doing this.

Please note: NHS Digital will not collect patients’ names or addresses. Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.

When do I need to make a decision by?

NHS Digital will take the first data collection in September 2021 so:

  • With the exception of your own care, if you do not want any data shared for planning and research:
    • You need to register a Type 1 Opt-out with your GP practice by phone or by completing the Type 1 Opt-Out Preference form.
    • If you register a Type 1 Opt-out after the first collection has started, no more of your data will be shared with NHS Digital. They will however still hold the patient data that was shared before you registered the Type 1 Opt-out.
    • You then need to register your National Data Opt-out choice with NHS Digital.
  • If you want your data shared with NHS Digital:
    • You do not need to do anything – the default is your data will be shared. However:
      • If you have previously registered a Type 1 Opt-out with your practice, you can request this is removed
      • If you have previously registered a National Opt-out (previously known as Type 2 Opt-out), you can change your preference on the NHS Digital: Your NHS Data Matters page.

Myth Busters

  • Patients can opt out at any time. The time limit only refers to the first data collection.
  • Data is only used to improve health and care provision, and is stored, shared and used securely.
  • NHS Digital never sells data and only shares it when it will help health and care, and it is safe, ethical and legal to do so.
  • NHS Digital will not share data with anyone who wants it; there are strict rules about how the NHS can use patient data.
  • NHS Digital will always uphold patients’ choice to opt out.