Most people in the UK who use the NHS – whether for an ongoing condition, maternity services, an operation, or an emergency – will have some data recorded about their care which is already available to researchers on an anonymised basis. For example, this could include:
- how long it took an ambulance to get you to hospital
- how long you waited for admission to a bed or for your operation or mental health intervention
- what sort of treatment you had
- how long you stayed in hospital (if you did)
- whether you were readmitted soon afterwards
- what ongoing treatment you have for health conditions such as diabetes (if any).
Controlled access to data held in patient records improves an individual’s care and helps the health and care system plan local services. Information can also be provided to researchers to enable them to find out more about diseases, their causes and risks, and develop new treatments. You may also have agreed to be part of a clinical trial, in which case you will already know what you agreed to, and what its purpose is.
The NHS and other organisations which use data to enable health research – such as Clinical Research Practice Datalink, UK Biobank, and Cystic Fibrosis Trust – already make their de-identified data available to researchers.