The National Data Opt-Out

The National Data Opt-Out

How the NHS and Care Organisations use your information:

Kensington and Chelsea Social Council (KCSC) is one of many organisations working in the health and care system to improve care for patients and the public. 

KCSC works alongside the NHS, the West London Clinical Commissioning Group (WLCCG) and the Voluntary and Community sector to support the provision of self-care services in the borough. KCSC manages several self-care programmes, coordinating referrals and supporting organisations to develop and deliver services. To do so, KCSC collects and shares personal confidential information from service users, to enable direct, consistent care between services.

Personal confidential data refers to information about you that is both identifiable (i.e. can be linked to you personally) and sensitive (in this case, containing information about your health). This form of sharing is essential to deliver care and is only shared with relevant care providers. This is known as Primary Use sharing.

Secondary Use Sharing:

In addition to supporting your direct care, the information collected about you when you use these services can be used and provided to other health 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 treatments
  • preventing illness and diseases in others
  • monitoring safety
  • planning new services

This is known as ‘Secondary Use sharing’ and may only take place when there is a clear, legal basis to use your information. All these uses help to provide better health care for you, your family and future generations. Confidential patient information about your health and care is only used like this where allowed by law. This does not include your data being shared with insurance companies or used for marketing purposes and data would not be used in this way without a separate agreement.

As part of our services, KCSC only uses anonymised or aggregated data sets to support research and planning. In these cases, you cannot be identified, and your confidential patient information isn’t necessary. However, if you want to ensure your personal confidential information isn’t used in this way, by KCSC or any other organisation, you can register an opt-out.

Your Opt-Out Rights:

You have a choice about whether you want your confidential patient information to be used for secondary purposes. If you are happy with this use of information 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.

To find out more or to register your choice to opt out, please visit www.nhs.uk/your-nhs-data-matters.  On this web page you will:

  • See more detail about 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 and understand who uses it
  • Find out how your data is protected
  • Access the system to view, set or change your opt-out choice
  • Find contact information to learn more or set your choice by phone
  • See the situations where the opt-out will not apply

You can also find out more about how patient information is used at:

https://www.hra.nhs.uk/information-about-patients/ (which covers health and care research); and

https://understandingpatientdata.org.uk/what-you-need-know (which covers how and why patient information is used, the safeguards and how decisions are made).

You can make changes to your choice at any time at the same website.

Health and care organisations have until 2021 to put systems and processes in place so they can be compliant with the national data opt-out and apply your choice to any confidential patient information they use or share for purposes beyond your individual care. Our organisation is currently compliant with the national data opt-out policy.