Collecting information about your health

Collecting health information from the general population

Healthcare professionals record information about various aspects of our health. They record this information in our medical records. For example, our records at the GP surgery or local hospital. These may be paper files or on the computer (electronic files). 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 my health records?

Medical records are confidential and are kept safe. 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

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. Whether you can take part in a trial depends on the entry conditions or eligibility criteria. The research team will collect information about you throughout the trial. They will follow the trial plan (protocol) so they only collect information that is necessary for the trial. They then analyse the information to work out the results. 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.

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. This is called a trial ID. The trial ID is used 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.

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. It can be helpful to talk to your family and friends about a trial when you are deciding if you would like to take part.