How it works

We will ask you to complete a questionnaire about yourself and your prostate cancer treatment to date, called ‘My Prostate Cancer Experience’.  

This will include information about you, your diagnosis, and any treatment you may have had. 

We will also ask you to fill in a 3-part questionnaire about your health, called ‘My Prostate Cancer Health’. This helps us to gain a full picture of your health. By completing it a few times a year, we can see how your health changes over time.

If you decide to join Prostate Progress, we will store the personal identifiable data (such as your name and address) that you provide.  A limited number of trained staff at Prostate Progress and in the NHS will have access to this data so we can contact you and link to your health-related records and other important health-related information about you. 

We may wish to contact you about a suitable trial or new treatment you may be eligible for, or we might find something that would be beneficial to tell you and your healthcare team about. No external organisation would ever be able to contact or identify you without your explicit permission to do so. 

Before letting researchers use the data in Prostate Progress, we will remove any information that could be used to identify you. 

We put in place strict safeguards to prevent any researchers from being able to identify you. All your data and information is stored on secure data servers based in the UK that use industry-standard encryption and controls in line with the UK law and best practices. 

Your health-related data that we make available to researchers will be de-personalised or de-identified. De-personalising or de-identifying health data involves removing – or disguising – your personal information so that it is difficult to single you out of the dataset. 

We will use a process called pseudonymisation. 

Research may be done by researchers from the UK and countries around the world and could be from organisations such as universities, charities, or industry. Any researcher who applies to do research will need to go through a strict application process, where their proposals will be carefully reviewed by a Data Access Committee. 

The Data Access Committee will only approve health-related research proposals that are for the public good and come from registered researchers at registered organisations. 

We will never allow access to your data for anything other than for health research that is for the public good. We will never sell or provide your personal identifiable data for the purposes of advertising or, for example, to insurance companies.