Your data

Your data can save lives

Research using health and care data saves lives. The UK government wants to unlock the benefits of health and care data in England, while maintaining the highest standards of privacy and ethics. SDEs are an important part of this strategy.

The Health Research Authority has published an online leaflet about how data is used in research. It covers both:

• Data specifically collected for research purposes – for example, for clinical trials.
• Routinely collected data – the kind of data used in SDEs.

How is my data protected?

We process and store your data safely and securely, in line with the law, using the Five Safes framework.

This framework is a set of standards to enable safe access to data. These controls work together to ensure that your data is used safely, appropriately, and only where there is a clear benefit to patients and the public. These principles set out how data is handled securely:

• Safe data: The South West SDE offers a secure environment where data can be accessed but is not shared. Researchers only use data that has been de-identified to protect privacy.
• Safe projects: Data is only used for ethical, approved health and care research with the potential for clear public benefit.
• Safe people: Only accredited researchers can access the data. There is a national registration process, which is completed once to access SDEs across the network.
• Safe settings: Researchers can only access the data they need for their project. Once their research is complete, their access to this data is removed.
• Safe outputs: Results of the analyses only leave the South West SDE when they have been screened and approved.

Access to data in our SDE is controlled by our Data Access Committee. They approve whether researchers can use the SDE for their proposed projects.

Data held in the SDE is de-identified. This means any personally identifiable information is removed or replaced before the researcher accesses it.

How is data de-identified?

Researchers can only access data where identifiers such as your name, NHS number, date of birth and address have been removed or replaced.

This process is called pseudonymisation, also known as using de‑identified data. Personal details are replaced with a unique code. This code does not reveal who you are, while allowing researchers to study patterns in the data.

A secure key exists which could link this code back to you. This is stored separately and cannot be accessed by researchers. It may only be used when there is a clear and lawful reason.

In some cases, anonymised data may be used. This means the data cannot be linked back to an individual at all.

Your data, your choice

You can choose whether your data is used in research via the South West SDE.

If you’re happy for your information to be used in this way, you don’t need to do anything.

Please contact us if you want to:

• Learn more about how your data is used in the South West SDE
• Opt out of your data being included in the South West SDE

You can also use the national data opt-out service. This will opt you out of other uses of data, as well as the South West SDE. Please read the national opt out service website carefully.

Your choice will not affect your care.

You can read the full details in our privacy policy.

Our data use register

Find out which projects are using data held in the South West Secure Data Environment on our data use register page.