6. Can I see my information, or ask you to correct it?

Key message: usually, when an organisation or a company has information about you, you can ask to have access to that information at any time, or ask them to correct it if it needs correcting. This does not apply in the same way to information used for research in the public interest. However, you should let your study doctor or nurse know if your contact details change, if you have given them to us for the study.

Usually, when an organisation or a company has information about you, you can ask to have access to that information at any time, or ask them to correct it if it needs correcting. However, data protection laws (including the UK Data Protection Act 2018) give special protection to information used for research. Giving people access to research information could harm studies like ours. This is because it is important to the reliability of the study results that we do not release information before the planned analyses are complete. You therefore cannot ask to access or correct information we have about you. Most of the information we will collect will also be in your medical notes though, and you can access your medical notes whenever you like. You should talk to your study doctor and nurse if you would like more information about the care that you have received.

The same data protection laws mean you cannot ask us to correct or amend the information we have about you, in most cases. However, it is obviously crucial to the quality of our studies that the information we have is right, so we will spend a lot of time and effort on making sure the information is correct.

You cannot ask us to change most of your information. However, if you have provided us with contact details for use in a study, it is important that we find out about any changes to these. Please let your study doctor or nurse know about a change in these details so that they can let us know. Otherwise, we might end up sending things meant for you to your previous contact details.