What is the national opt-out programme?

The National Data Opt-Out service was introduced as part of the National Health Service (NHS) in the UK. It replaced the previous "Type 2" opt-out and came into effect on 25 May 2018, in accordance with the General Data Protection Regulation (GDPR) and the Data Protection Act 2018.

The National Data Opt-out Programme gives you the right to opt-out of your confidential patient information being used for reasons other than your individual care and treatment, such as research or planning purposes (e.g. for improving healthcare or conducting medical research).

Information held about you

The national data opt-out applies to confidential patient data that originates within the health and adult social care system in England.

NHS and Local Authorities providing health and adult social care services are considered to be part of the health and adult social care system and must apply the national data opt-out. This includes health and care services commissioned by the Local Authority irrespective of the providing organisation.

The specific inclusions where services must consider opt-outs when processing for purposes beyond individual care, in line with wider policy, cover a number of organisations such as:

• Health service providers
• Private providers
• Local authorities
• Public health organisations

Specific exclusions where this does not apply include:

• Children’s social care and education (regulated by Ofsted or Department of Education (DfE))
• Health-related data which originates and is shared outside of the health and adult social care system in England, for example, DWP, Court, HMRC 
• Any information generated solely for research purposes.

The London Borough of Barking and Dagenham (‘LBBD’) publishes privacy notices which inform you about how we use your data. Data Sharing Agreements are in place with partners/organisations where onward disclosure is required under the terms of the privacy notice.

How we will use the information we hold about you

The LBBD is one of many organisations working in the health and care system to improve care for patients and the public.

Whenever you use a care service through LBBD, important information about you is collected in a client record for that service. Collecting this information helps to ensure you get the best possible care. The information collected about you when you use these services can also be used and provided to other organisations for purposes beyond your individual care, for instance to help with:

• Improving the quality and standards of care provided
• Research into the development of new services
• Preventing illness and diseases
• Monitoring safety
• Planning services

This may only take place when there is a clear legal basis to use this information. All these uses help to provide better health and care for you, your family and future generations. Confidential patient information about your health and care is only used like this where it is allowed by law. Most of the time, data used for research and planning is anonymised, which means that you cannot be identified from the data.

Your rights

If you wish to opt out of your data being used for purposes other than your direct care, you (or someone acting as your proxy) can register your decision to opt-out with the NHS.

On this web page you will:

• See what is meant by confidential patient information.
• Find examples of when confidential patient information is used for individual care and examples of when it is used for purposes beyond individual care
• Find out more about the benefits of sharing data.
• Understand more about who uses the data.
• Find out how your data is protected.
• Be able to access the system to view, set or change your opt-out setting.
• Find the contact telephone number if you want to know any more or to set/change your opt-out by phone.
• See the situations where the opt-out will not apply.

If you are happy with this use of your confidential patient information, then you do not need to do anything.

If you do choose to opt-out, your confidential patient information will still be used to support your individual care. You can change your mind about your choice at any time.

Data being used or shared for purposes beyond individual care does not include your data being shared with, for example, insurance companies or used for marketing purposes, and data would only be used in this way with your specific agreement.

Providing accurate information

It is important that we hold accurate and up-to-date information about you to assess your needs and deliver the appropriate services. If any of your details have changed, or change in the future, please tell us so that we can update your records.