If you are asked about taking part in research, usually someone in the care team looking after you will contact you. People in your care team may look at your health records to check whether you are suitable to take part in a research study, before asking you whether you are interested or sending you a letter on behalf of the researcher.

It’s important for you to be aware that if you are taking part in research, or information about you is used for research, your rights to access, change or move information about you are limited. This is because researchers need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from a study, the sponsor will keep the information about you that it has already obtained. They may also keep information from research indefinitely.

If you would like to find out more about why and how patient data is used in research, please visit https://understandingpatientdata.org.uk/what-you-need-know

In England you can register your choice to opt out via the NHS website . If you do choose to opt out you can still agree to take part in any research study you want to, without affecting your ability to opt out of other research. You can also change your choice about opting out at any time.

If you wish to raise a complaint on how any research organisation has handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with their response or believe they are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).