FAQs

Your data will be stored and managed securely, in line with data protection laws, including the UK General Data Protection Regulation (UK GDPR) and the relevant security standards.

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 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. Having access to your personal identifiable data also means that we can link your health-related records to the other data that we collect, for example, your questionnaire data. This helps us build a full picture of your health. Before letting researchers see this information, we will remove any information that could be used to identify you. To access health-related information about you that is stored by the NHS and other UK-based health organisations, we will need to share some of your identifiable data (for example, your NHS/CHI/H&C number, name or date of birth) with them. We will only share what is absolutely necessary, and strict controls will be in place to protect your personal data.

All the information we collect about you will be encrypted when it is in transit and at rest and stored according to strict security standards on UK-based servers. Your data will never leave these secure servers and will never be sent outside the UK for any reason. Your health-related data that we make available to researchers will be de-personalised or de-identified. Depersonalising or de-identifying health data involves removing – or disguising – your personal information so that you cannot be singled out of the dataset. We will use a process called Pseudonymisation.

We will charge approved registered researchers to access the information held on Prostate Progress. However, any information that researchers access is fully pseudonymised (or de-identified) before research takes place. This includes any pseudonymised patient information that you have supplied to us or given us access to. The reason we charge is to help recover our costs in processing, delivering, and sustaining the data in Prostate Progress. We will also share a portion of any revenue we receive with the NHS and other organisations who have supplied data being used. If any surplus revenue is made that goes beyond cost recovery and revenue sharing with the NHS and other organisations, this surplus will go towards expanding Prostate Progress to cover all of the UK and have as many people affected by prostate cancer taking part and to Prostate Cancer Research to support and fund our other charitable activities.

Even if you decide not to join Prostate Progress, de-identified (pseudonymised) information from NHS records may still be used within secure research environments to support approved research aimed at improving the diagnosis, treatment, and care of prostate cancer. If, however, you would prefer the NHS to not use your data for research and planning, including in Prostate Progress, you can specify this at: www.nhs.uk/your-nhs-data-matters.

You can withdraw from Prostate Progress, or reduce your involvement, at any time.