Research Data

Health data research plays a vital role in understanding health conditions and improving patient care. By using patient health data, researchers can learn more about diseases, their causes, and symptoms, identify those most at risk, and support earlier diagnosis.

This research takes place across NHS organisations, and we take care to ensure that patient data is used responsibly and in a way that respects patients’ choices.

What is Health Research Data?

During a study, researchers may collect or review information about your health, which could include:

  • Your medical history
  • Blood test results
  • Other health checks
  • Questionnaires

The research team records this information in secure forms and combines it with data from other participants.

In many studies, your name is not needed. In these cases, your information is pseudonymised—your name is replaced with a code to protect your identity.

In some studies, researchers do need your name and contact details. Even then, only a small number of authorised staff can access this information, ensuring your personal data is kept safe.

Your Right to Withdraw from Research

You can stop taking part in a research study at any time, without giving a reason. However, the research team will keep any data already collected about you. Before you join a study, you can find out how your data will be used.

In most cases, you also have a choice about whether your patient data is used for other types of research. There are two exceptions:

When the data is anonymous. Because it cannot be linked to you, the research team cannot contact you.

When it is not feasible to ask everyone, usually due to the large number of people involved.

You can opt out of your data being used in this way. Speak to your GP or visit the NHS website to learn more about the national data opt-out policies, which are available in different languages and accessible formats.

GDPR and Patient Data

In the UK, all research using patient data follows the General Data Protection Regulation (GDPR) and the Data Protection Act. Research is conducted in full compliance with UK laws and regulations to ensure your information is protected.

For more information on how patient data is used in research, please visit the Health Research Authority website.