Key message: if you decide you would like to stop all your visits in a study for any reason, we will need to keep the information we have about you to make sure the results of the study are reliable.
You can ask us to stop collecting more information about you, but if you don’t say this, we will keep collecting information from any other hospital visits you have, if they are relevant to the study, and we will keep collecting information about you from information providers such as NHS Digital. This way you can keep contributing to the study without giving any more of your time.
Click on the sections below to find out more.
8.1. Can I stop taking part in a study at any time?
You can stop taking part in any part of a study at any time. You do not have to give a reason why you want to stop, although it is very helpful to the study results for us to know the reason, if you are willing to say. If you decide you would like to stop all study visits, we will need to keep the information we already have about you.
8.2. Can I ask you to delete my information or remove it from the study analysis?
Usually, when an organisation or a company has information about you, you can ask them to delete it, or stop using it for a particular purpose, at any time. However, data protection laws (including the Data Protection Act 2018) give special protection to information used for research. The results of research can change how patients are treated in future, so it is very important that the results of studies like ours are reliable.
We also need to follow laws and policies that say we need to keep a clear record of our research. This is so that regulatory authorities (such as the Medicines and Healthcare products Regulatory Agency, MHRA) and other authorised organisations can check that we have carried out the research correctly and lawfully.
For these reasons, we can’t remove or delete the information we have already collected about you because it would make the results of the study less reliable, and this might harm future patients. We will nonetheless treat your information securely and with care, and use your information only in the ways we’ve told you about.
8.3. Will more of my information be collected if I stop my study visits?
If you have decided you would like to stop all parts of a study, including the study visits, it is important that you discuss this with your study doctor and nurse and let them know if you are not happy for us to collect any further information. If you still occasionally go to your hospital for routine visits, we would like to hear about these from your study doctor or nurse, if the visits are relevant to the study. This way, we can still include you in the study without you having to do any extra hospital visits. This means you can still contribute to the study and help make the results more reliable, without giving any extra time.
You can tell your study doctor or nurse at any time that you do not want any more information to be sent to us. They will inform us, and we will make sure your wishes are respected. However, if you do not say that you do not want any more information to be sent, we will still ask your study doctor or nurse for updates about your health from time to time.
In some of our studies, we get some information about you from your electronic medical records held in NHS databases by NHS Digital or other organisations. This is so that we can do some parts of the study while taking up less of your and your hospital’s time. You can tell your study doctor or nurse at any time that you would like us to stop doing this. They will let us know, and we will make sure your wishes are respected. However, if you ask to stop your study visits but do not tell your study doctor or nurse that you want us to stop collecting information from your electronic medical records, we will continue doing it.
If you are taking part in a study that involves medicines and you tell us you do not want us to collect any more information about you, we will still be legally required to collect information about any serious side-effects you experience, or health events that might be related to the treatment you have received. This is so that doctors using the same treatment have all the information they need about possible side-effects, so this is important in protecting other patients’ safety. Your study doctor will report any relevant information to us if we need to have it, so you won’t need to do anything else. We will make sure that any information that could identify you is kept to a minimum and only collected if needed.
8.4. What will happen if I lose contact with the study doctor or nurse?
If, for any reason, you stop attending your study visits without telling anyone at your hospital or clinic, or you change your contact details and do not tell your hospital so that they lose contact with you, we may ask your study doctor or nurse to contact your GP to check if you are OK and still happy to take part in the study.