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.
A new national data opt-out was introduced in May 2018, following recommendations from the National Data Guardian. People can opt out of having their confidential patient information shared for reasons beyond their individual care, for example for research and planning.
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 www.nhs.uk/your-nhs-data-matters/. 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).
When you agree to take part in a research study, the sponsor will collect the minimum personally-identifiable information needed for the purposes of the research project. Information about you will be used in the ways needed to conduct and analyse the research study. NHS organisations may keep a copy of the information collected about you. Depending on the needs of the study, the information that is passed to the research sponsor may include personal data that could identify you. You can find out more about the use of patient information for the study you are taking part in from the research team or the study sponsor. You can find out who the study sponsor is from the information you were given when you agreed to take part in the study.
For some research studies, you may be asked to provide information about your health to the research team, for example in a questionnaire. Sometimes information about you will be collected for research at the same time as for your clinical care, for example when a blood test is taken. In other cases, information may be copied from your health records. Information from your health records may be linked to information from other places such as central NHS records, or information about you collected by other organisations. You will be told about this when you agree to take part in the study.
Information about you that is collected during a research study may be kept securely to be used in future research in any disease area, including research looking at social and economic factors affecting health. This may include combining it with information about you held by other health or government organisations such as NHS Digital. Usually the information is combined together by matching information that has the same NHS number. Doing this makes maximum use of the information you have provided and allows researchers to discover more.
Researchers may not be able to specify all the possible future uses of the information they keep. It could include providing the information to other researchers from NHS organisations, universities or companies developing new treatments or care. Wherever this happens it will be done under strict legal agreements. The information about you will be depersonalised wherever possible so that you cannot be identified. Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.
On rare occasions NHS organisations may provide researchers with confidential patient information from your health records when we are not able to seek your agreement to take part in the study, for example because the number of patients involved is too large or the NHS organisation no longer has your contact details. Researchers must have special approval before they can do this.