National Data Opt Out

Sue Ryder only uses your confidential patient information* to provide you with direct care, and it is only shared with others for the purposes of providing care as set out in our privacy policy. We would only use your confidential patient information* for research with your express consent, however, we use various health record systems which in palliative care (including hospice at home) allow records to be input direct into your centralised health record. Any visits from GPs or attendance at hospital will also be recorded in your centralised health record. Collecting this information helps to ensure you get the best possible care and treatment.

The information in your centralised health record is used by the NHS to help plan local service including:

• improving the quality and standards of care provided
• research into the development of new treatments
• 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 allowed by law.

Most of the time, anonymised data is used for research and planning so that you cannot be identified in which case your confidential patient information isn’t needed.

You have a choice about whether you want your confidential patient information* to be used in this way. 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.

To find out more or to register your choice to opt out, please visit nhs.uk/your-nhs-data-matters. 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.

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 change your mind about your choice at any time.

Our organisation is currently compliant with the national data opt-out policy.

* confidential patient information identifies you and says something about your health, care and treatment