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Information about you and your privacy

Women discussing trials

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

 

Collecting health information from the general population

Information is recorded by health care professionals about various aspects of our health, whether we take part in a clinical trial or not. This is recorded in our medical records (paper files or computer records) at the GP surgery or at a local hospital, for example.

Your records will 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.

Medical records are confidential and are kept safely. They can only be seen by certain people who need to see them.

Occasionally a researcher will get special permission to look at this information to try and find out more about certain medical conditions. This has been very important over the years in helping researchers find links between possible causes and particular illnesses, for example.

The National Institute for Health Research has written a leaflet with information about this. It is on the NHS website and is called Your health records save lives.

 

Collecting information when you take part in a clinical trial

When you join a clinical trial, the research team will need to know certain things about your medical history. This includes blood test and scan results, details of the stage of your cancer and any treatment you have already had. It is important that they know this information. It will help them make sure you are eligible to take part in the trial. And it will mean they can analyse the results more thoroughly.

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

For safety's sake, the trial team will write to your GP with information about the treatments you are having and possible side effects. The people who care for you at the hospital or clinic will also know. And it will be recorded in your hospital notes. It is up to you whether you tell anyone else.

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

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Updated: 9 October 2013