Privacy Notice – Template Transparency Statement, (version 2)
National data opt-out compliance - Patient Resources
The following is a recommended set of text to reference the wider use of a patient’s health and care data by local and national NHS and care organisations that can be added to an organisation’s website alongside the organisation’s Privacy Notice. It is intended to provide a simple easy to understand message about the wider uses of data, drawing upon the language used in other materials which has been tested with patients and the public. The intention of the Template Transparency Statement is to point patients to the national online resources that have been created to support this communication to patients, and to ensure they are aware that they have a choice about the use of confidential patient information about them being used for purposes beyond their individual care.
This is not intended to replace the organisation’s own Privacy Notice which needs to be specific to the organisation.
Organisations are reminded that they need to update their Privacy Notices (or ‘Fair Processing’ material) to satisfy the General Data Protection Regulation (GDPR) and data protection legislation. The key points to note are that the GDPR strengthens the requirements on organisations as data controllers to provide clear and concise information to patients in order to be fairly and lawfully processing information, being clear about what data is collected and how it is processed. This information should be described accurately and clearly within the organisation’s Privacy Notice along with the identity and contact details of the data controller and made available to patients. Further information and guidance about Privacy Notices under GDPR is available from the Information Commissioner’s Office (ICO) at: https://ico.org.uk/for-organisations/guide-to-data-protection/privacy-notices-transparency-and-control/privacy-notices-under-the-eu-general-data-protection-regulation/.
Recommended text for transparency statement to be added alongside the organisation’s Privacy Notice.
“How the NHS and care services use your information
([insert organisation] is one of many organisations working in the health and care system to improve care for patients and the public).
Whenever you use a health or care service, such as attending Accident & Emergency or using Community Care services, important information about you is collected in a patient record for that service. Collecting this information helps to ensure you get the best possible care and treatment.
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 treatments
- preventing illness and diseases
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 www.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.
Data being used or shared for purposes beyond individual care does not include your data being shared with insurance companies or used for marketing purposes and data would only be used in this way with your specific agreement.
Health and care organisations have until 2020 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 / is not currently’ compliant with the national data opt-out policy. “
 This paragraph to be inserted by national organisations such as ALBs
 It is recommended that this is included to be clear to patients whether your own organisation is currently compliant with the policy for applying national data opt-outs.