Your data

Keeping NHS patient data secure and protected while supporting research to improve care in Eastern England.  

 

Because the NHS has data from so many people, it can even be used for research into less common conditions and illnesses that are harder to research. And the research is more likely to include information from people who might otherwise find it more difficult to take part in research.

All patient information is ‘de-personalised’ before researchers have access to it in the Secure Data Environment (SDE). This means that information that can identify individuals is removed. Researchers must also demonstrate that their research will benefit public health before it is approved.

Previously, accessing NHS data for research has been technically challenging and time-consuming, which has limited the amount of research that has been possible. The national secure data environment (SDE) network, including the Eastern England SDE, is designed to make this process easier for researchers while maintaining the highest data protection standards and keeping the control of patient data within the NHS.

Your data helps:

  • Your clinical team to improve patient care
  • Increase opportunities for patients to participate in clinical trials
  • Scientists discover new treatments
  • NHS professionals to improve healthcare planning
Why your data is important

NHS patient data – supporting your individual care and improving care for everyone

Every time you receive NHS treatment, information is recorded about you and your care – for example medicines you are taking or the results of blood or other tests. On its own, this information helps ensure that you get the right care at the right time. When combined with information from many other people, it helps the NHS to understand what services are necessary in your region and can also be used to support vital research that can improve care and save lives.

Secure access to de-personalised data under the control of the NHS

How does the SDE work?

The Eastern England SDE is a digital platform that allows approved researchers to securely access de-personalised patient data for health research.

The SDE protects the privacy, security and integrity of NHS patient data during research using state-of-the-art technology, robust data policies and rigorous oversight of data use.

Learn more about data protection

Who decides who can access data

Our data access committee includes clinicians, researchers and patient representatives

The Eastern England SDE Data Access Committee (DAC) decides who can access de-personalised NHS data for research in the Eastern England SDE. The committee is responsible for reviewing and assessing research applications for access to patient data through the Eastern England SDE and either approving or rejecting them.

All applications are reviewed against the same criteria, based on the ‘5 Safes’ Framework developed by the Office for National Statistics.

Learn more about data governance View our data use register
Safe projects

Is the use of data appropriate?

Safe people

Can the users be trusted to use the data in an appropriate manner?

Safe settings

Is the access environment secure?

Safe data

Is there a disclosure risk in the data itself?

Safe outputs

Are the outcomes safe and appropriate to release from the SDE?

Your choices about NHS data and research

Opting out

If you do not want to have your data used for research through the Eastern England SDE you can opt out. There are currently two ways to opt out of the Eastern England SDE, depending on what kinds of research you want to opt out of. You do not need to do both opt outs.

The Eastern England SDE opt out

If you choose this opt-out, your data will not be used in any research that takes place within the Eastern England SDE, but may still be used for other applicable research. For example, research using your data through an SDE in another region. Your choice will apply to all applicable research applications made after you opt out.

Opt out locally

The National Data opt out

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. For example, when required by law.

Opt out nationally
People have been involved since the early planning phase

Get involved and have your say

People living in the East of England and East Midlands continue to have an important role in shaping decisions about how the Eastern England SDE develops and functions, and who can access de-personalised data through the SDE. 

We have several ways that East of England and East Midlands residents can get involved, whether through our Core Public Advisory Group (CPAG), as a public member of our Data Access Committee, by completing our survey or simply signing up to our newsletter to hear more about new developments. You can also read about the difference that our public contributors have made to the SDE. 

  • What difference does it make?
  • Become a member of the Data Access Committee
  • Share your thoughts in our public survey
  • Join our Core Public Advisory Group
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