Collecting information about your health

This page tells you how information about your health is used and kept safe. It includes information on

Collecting health information from the general population

Health care professionals record information about various aspects of our health. They record this information in our medical records at the GP surgery or at a local hospital, for example. The medical records could be paper files or on the computer.

Your records contain information about your health, such as blood test results or whether you have been diagnosed with a certain medical condition. They may also contain some personal information, such as your postcode or job.

Who can see your health records

Medical records are confidential Open a glossary item

and are kept safely. Only certain people who need to see them can.

Sometimes a researcher might get special permission to look at this information to try and find out more about certain medical conditions.

Being able to look at health records has been very important over the years in helping researchers find out a lot about:

medical conditions and
their causes and treatments

The National Institute for Health Research (NIHR) has written a leaflet with information about this.

Download 'Your health records save lives'.

Collecting information when you take part in a clinical trial

When you join a clinical trial, the research team needs to know certain things about your medical history. This includes:

blood test results
scan results
details about the size of the cancer and whether it has spread
information about any treatment you have had

It is important that the researchers know this information. It helps them make sure you are suitable to take part in the trial. It also means they can analyse the results more thoroughly.

As with all medical records, this information is confidential. There are a few people who will need to know you are taking part in a trial.

Who is told that you are in a trial

The trial team will tell your GP that you are taking part in the trial. They will include information about the treatments you are having and the possible side effects. This is so that they can continue to treat you safely.

People who care for you at the hospital or clinic will also know. Information about the trial is recorded in your hospital notes.

It is up to you whether you tell anyone else that you are taking part in a trial.

Protecting your identity

When you take part in a trial, you have a code number that will be on all the paperwork that relates to you. The code is instead of your name. So your name won't appear in any reports of the results and no one will be able to identify you from this information.