Data and research

Research data

Health data research is important to help understand health conditions and improve patient care. It uses patient health data to better understand diseases and health conditions, including their causes and symptoms. It helps to identify those most at risk and diagnose diseases earlier.

This type of research takes place in almost all NHS organisations and we take important steps to make sure that patient data is used in a way that respects patients' wishes.

What is health research data?

During a study, there are several points when a researcher might record or look at information about your health.

These might include:

• looking at your medical history
• checking blood tests
• other health checks
• viewing questionnaires.

The research team will record this data in special forms and combine it with the information from everyone else in the study.

Often most of the research team will not need to know your name. In these cases, someone will remove your name from the research data and replace it with a code number. This is called pseudonymised data.

In other types of research, the research team will need to know your name and contact details. Researchers must always make sure that as few people as possible can see this information that can show who you are.

Decisions about your patient data and research

You can stop being part of a research study at any time, without giving a reason, but the research team will keep the research data about you that they already have. You can find out what would happen with your data before you agree to take part in a study.

In most cases you'll also have a choice about your patient data being used for other types of research. There are 2 cases where this might not happen.

1. When the research is using anonymous information. Because it's anonymous, the research team don't know whose data it is and can't ask you.
2. When it would not be possible for the research team to ask everyone. This would usually be because of the number of people who would have to be contacted. You can opt-out of your data being used for this sort of research. You can ask your GP about opting-out, or you can find out more on the NHS website.

Visit the NHS website if you want to choose to stop your data being shared for health research and planning. You can also view the national data opt-out policies, available in different languages and accessibility formats. 

GDPR and patient data

In the UK we follow the General Data Protection Regulation rules and the Data Protection Act. All research using patient data follows UK laws and rules.

For more details on the use of information in research visit the Health Research Authority's website.