What is the patient opt-out

The NHS Constitution states "You have the right to request that your confidential information is not used beyond your own care and treatment and to have your objections considered". If you do not wish your confidential information to be used for anything except your direct health care you are able to ‘opt-out’. As your data may be used in a variety of ways and for a variety of purposes you are able to opt-out of some of these but remain ‘in’ for others e.g. you may not wish a sub-set of your data being used for clinical audit purposes, but may wish your anonymised data to be used for research purposes so you would not opt-out of this. You can discuss this with your GP Practice who will explain the different options you have.

There are several forms of opt- outs available at different levels. These include for example:

A. Information directly collected by the CCG:

Your choices can be exercised by withdrawing your consent for the sharing of information that identifies you, unless there is no overriding legal obligation, for example, because pseudonymised information only is being used.

Where you have provided identifiable information directly to a ‘CCG Care Service’ e.g. Mental Health services… we will ensure that you are provided with full information about how your data will be used to provide the service and you will be asked for explicit consent where it is planned to share your identifiable information with other organisations and for other purposes.

B. Information not directly collected by the CCG, but collected by organisations that provide NHS services.

Type 1 opt-out

GPs are required by law to provide patient confidential data to NHS Digital who has responsibility for collecting data from across the health and social care system from a range of organisations where you may receive care, such as hospitals and community services.  Strict controls are used to ensure that all data is held securely and confidentially and only available to authorised staff who have a statutory or other legitimate reason for viewing the data. All required steps have been taken to ensure the safe, secure and confidential transfer of this information.

If you do not want personal confidential data information to be shared outside your GP practice, for purposes beyond your direct care you can register a type 1 opt-out with your GP practice. This prevents your personal confidential information from being used other than in particular circumstances required by law, such as a public health emergency like an outbreak of a pandemic disease.

Patients are only able to register the opt-out at their GP practice.

Type 2 opt - out

Patients within England are able to opt out of their identifiable information being shared by NHS Digital for purposes other than their own direct care, this is known as the 'Type 2 opt-out'

Further details of the circumstances under which NHS Digital may share out identifiable information can be found under their Fair Processing Notice - http://digital.nhs.uk/patientconf

Patients are only able to register the opt-out at their GP practice.

Further Information and Support about Type 2 opt-outs

For further information and support relating to type 2 opt-outs the following options are available:

  1. visit the website http://www.hscic.gov.uk/article/7092/Information-on-type-2-opt-outs
  2. contact  NHS Digital contact centre at enquiries@hscic.gov.uk referencing 'Type 2 opt-outs - Data requests' in the subject line; or
  3. call NHS Digital on (0300) 303 5678
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