Information for the Public

More information about the SDEGet involved

About the SDE

The East of England Secure Data Environment (SDE) is a digital platform that allows approved researchers to securely access de-personalised patient data for health research.

Using the East of England SDE, researchers from the NHS, universities, charities or commercial organisations can apply to access data from de-personalised patient records from people treated in NHS settings in the East of England, for research to improve public health.

The area

The East of England includes the following regions, with a total population of 7 million people:

Norfolk and Waveney
Cambridgeshire and Peterborough
Suffolk and North East Essex
Bedfordshire, Luton and Milton Keynes
Hertfordshire and West Essex
Mid and South Essex

Privacy, Security and Integrity

All applications are reviewed against the same strict and consistent set of criteria to ensure they are safe, and that the research is in the public interest.

Research is vital to improve the way that we prevent, predict, diagnose and treat health conditions. The East of England SDE makes research using NHS data safer and easier, while maintaining patient privacy and retaining control of that data in the NHS.

The East of England SDE protects the privacy, security and integrity of NHS patient data during research by using:

Anonymisation all directly identifying information is removed from the data before researchers use it 
Security testing and accreditation the SDE has been built to industry-leading standards of cybersecurity and has been independently tested
Minimisation researchers will only receive access to the specific data required for their approved research 
Environment controls researchers can only access the approved data within the controlled environment of the SDE, where they cannot copy, delete, remove or change the data
Exit controls research outputs are manually checked to ensure that no information that could be re-identified is removed from the SDE
Verification researcher and organisation credentials and experience are validated before access
Contractual controls researcher organisations agree to legally-binding terms and conditions for use of the data  
Benefit to public health assessment all applications for data access are assessed by an independent panel, which includes members of the public, against consistent and well recognised standards to determine whether they are in the public interest

Opting Out

If you are happy for your de-personalised NHS data to be used for approved research through the East of England SDE, you do not need to take any action.

If you have questions or concerns, you are welcome to ask the SDE team by emailing us at cuh.eoe.sde@nhs.net or check the information on this site.

If you do not want your NHS data to be used for research through the East of England SDE, you can opt out using one of the options below. You do not need to do both opt outs.

The East of England SDE opt-out

If you choose this opt-out, your NHS patient data will not be used in any research that takes place within the East of England SDE, but may still be used for other applicable research, such as, research using your data through an SDE in another region.

The East of England SDE opt out will apply to research projects that occur from the point of opt out, but will not apply to projects that took place before the opt out was registered.

You can make, check or change your choice:

By phone: Call 01223 348 490
By email: cuh.eoe.sde@nhs.net

The National Data Opt Out (NDOO)

If you choose this opt-out, NHS England and other health and care organisations will not be able to share any of your personal data with other organisations for research and planning, except in certain situations, such as, when required by law.

Visit nhs.uk/your-nhs-data-matters/ for more information.

Leaflets

You can read more information about the SDE in our leaflets below. Please get in touch if you would like to discuss printing leaflets.

Get involved

The data available for research through the East of England SDE ultimately comes from NHS patients across the region and we want to hear from you!

There are a variety of ways that people can get involved and have their say on use of NHS data for research through the East of England SDE.

Want to stay up to date with what is going on and hear about events, involvement opportunities and developments in the SDE?

Subscribe to our newsletter and receive regular updates direct to your inbox

Complete a short survey

Our anonymous survey is open to any one resident in the East of England and is quick to complete. Completed eligible surveys go into a monthly prize draw for a shopping voucher.

Apply to be part of our Core Public Advisory Group

Our Core Public Advisory Group (CPAG) is made up of people from across the East of England who are interested in research using health data to be part of a Core Advisory Group. This group has been working with the project team since November 2023 to provide a patient and public perspective on the development of the Secure Data Environment.

Apply to be a public member on the Data Access Committee

Decisions about who can access NHS patient data in the SDE are made by our Data Access Committee (DAC), of which 50% are public members. Members of the DAC read and discuss project applications, and help decide whether they should be approved.

Do you work with people who might be interested in getting involved? You can share our Get Involved poster

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