National Data Opt-Out Programme


The National Data Opt-Out Programme is applied at University Hospitals of Northamptonshire. It describes how patient information is collected and used, the choices you have about how your data is used, and how to opt out if you do not want your information used for research and planning. It also provides details on where to find more information and how to change opt-out preferences.

University Hospitals of Northamptonshire (Kettering General Hospital NHS Foundation Trust and Northampton General Hospital NHS Trust) is compliant with the National Data Opt- Out Programme.

Whenever you use a health or care service provided by University Hospitals of Northamptonshire, such as attending Accident & Emergency or attending an outpatient appointment, important information about you is collected in a patient record. 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
  • 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 is not needed.

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

What is the National Data Opt-Out?

The National Data Opt-Out gives you a choice about whether you want your confidential patient information to be used in this way. Individuals can choose to stop their confidential patient information being used for research and planning. They can also make a choice for someone else, for example, children under the age of 13.
Opt-out preferences apply to the health and care system in England. They do not apply to health and care services accessed in Scotland, Wales, or Northern Ireland.

What should I do next?

If you are happy with this use of information you do not need to do anything.

If you would like to opt out, or would like to register a choice for a child under 13, or someone else that you can legally make decisions for, you should visit the ‘Your Data Matters’ website: Make your choice about sharing data from your health records - NHS

You can also check or update your choice using the NHS Digital Contact Centre. The phone number is 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).

It is possible to submit your choice via email or post, but you must first download and complete a form. This can also be accessed from the website linked above.

If you do choose to opt out your confidential patient information will still be used to support your individual care.

Where can I find more information?

To find out more, please visit Choose if data from your health records is shared for research and planning - NHS

On this page you can:

  • 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
     

Can I change my opt-out preference?

Yes, you can change your mind about your choice at any time and can update your preference via the ‘Your Data Matters’ website or any of the other options detailed in the ‘What should I do next?’ section of this page.

Can University Hospitals of Northamptonshire register my opt-out preference?

No, your preference must be registered directly with NHS England.

How has compliance with the National Data Opt-Out been achieved at University Hospitals of Northamptonshire?

For teams that use patient information for research and planning purposes, there is  a requirement to check the data opt-out status of patients before using this information.

Where patients have chosen to opt-out, their data will not be used. UHN has a National Data Opt-Out policy which is available to all staff. This explains the steps that need to be taken to ensure that patients that have opted out are removed from relevant datasets.

The National Data Opt-Out predominantly impacts the UHN Research and Innovation Team, Clinical Audit Team and other teams that submit data for audit, research and planning purposes.

Information about opt-out preferences is held centrally by NHS England. Opt-out preferences for UHN patients are extracted from NHS England’s central database by the UHN Health Intelligence Team. This is a team which is responsible for making data available across UHN for reporting and monitoring purposes.

This information will be updated daily and will be made available in a report to allow this to be cross checked against other datasets when audits or research is being conducted.

How do University Hospitals of Northamptonshire know when the opt-out applies?

Details about the application of the opt-out preference are available in the UHN National Data Opt-Out policy. Some research and audits are granted exemptions which mean that the National Data Opt-Out does not apply to them.

This is managed by the Confidentiality Advisory Group. The Confidentiality Advisory Group (CAG) is an independent body which provides expert advice on the use of confidential patient information. The key purpose of CAG is to protect and promote the interests of patients and the public, while at the same time facilitating appropriate use of confidential patient information for purposes beyond direct patient care.

Registers of approvals can be found on their website - CAG registers - Health Research Authority.

The Health Quality Improvement Partnership (HQIP)) also publish a useful directory which includes high-level information about the National Clinical Audit and Patient Outcomes Programme (NCAPOP) and additional projects commissioned by HQIP, plus national quality improvement projects operated by other organisations.

Can I opt-out of information being used for care and treatment?

No, the national data opt-out policy does not apply to information used for individual patient care.

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.

Where can I find more information?

Information in different languages and formats, including audio. BSL and easy read can be accessed via the NHS website. 

If you have any further questions, you can contact: Data Security and Protection Team, email ngh-tr.dpo@nhs.net.