Data

Your data can save lives

Research using health and care data saves lives. This was made especially clear during the Covid-19 pandemic.

The UK government wants to unlock the benefits of health and care data in England, while maintaining the highest standards of privacy and ethics. Secure Data Environments (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 NHS Secure Data Environments

How is my data protected?

We process and store your data safely and securely, in line with the law: the Data Protection Act 2018, the UK General Data Protection Regulations (UK GDPR) and the NHS Act 2006.

Data held in the SDE is depersonalised. This means any personally identifiable information, such as names, addresses and NHS numbers, is removed before the researcher accesses it.

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

South West SDE data is safeguarded using the 5 Safes Framework.

• Safe people
  Only trained and specifically accredited researchers can access the data
• Safe projects
  Data is only used for ethical, approved research with the potential for clear public benefit
• Safe settings
  Access to data is only possible using the SDE
• Safe data
  Researchers only use data that has been depersonalised to protect privacy
• Safe outputs
  All research outputs are checked to ensure they can’t be used to identify subjects

What kind of data is held in SDEs?

SDEs store depersonalised ‘routinely collected’ data from NHS and local government organisations. This might include information about:

• Illnesses and conditions
• Treatment and care
• Medical imaging such as X-rays
• Test results
• Medicines and allergies
• Appointments and hospital admissions
• Care and support outside hospital including social care

They can also store data from other sources such as long-term studies of large groups of people.

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.

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.