Will the information I provide be kept confidential?
We will need to use information from you, your medical records and your GP for this research. This information will include your name, NHS number and contact details. The information you provide to the research team will be treated as confidential and will only be used for the purpose of the study, unless you tell the research team or therapist that you or someone else is at risk of harm, or that you have, or intend to, commit a crime. If this happens, the research team will have to inform your GP and the relevant authority. We will make every effort to ensure this is discussed with you first.
People who do not need to know who you are will not be able to see your name or contact details. Data about you will be given a code number instead. We will keep information about you safe and secure.
Data with personal details included will be used by the study team to contact you before and during your participation in the study or to check records to make sure the research is being done properly.
Personal data will only be kept for up to 12 months after the study has ended. After 12 months these details will be destroyed. The purpose for keeping them for 12 months after the study has finished is to notify you about the results of the study.
Coded data, with all personal details removed, will be stored on password-protected computers for 5 years, in accordance with University of Bristol and University of Bath guidelines.
Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.
With your consent, data collected in this trial may be used in future ethically approved research studies on the understanding that all information may be shared anonymously with other researchers i.e., it will not contain any information about your name, date of birth or contact details so no one will be able to identify you. It will continue to be kept securely and remain confidential.
You can also view information from the Health Research Authority on the use of patient data in research by accessing: www.hra.nhs.uk/information-about-patients/.
What are your choices about how your information is used?
- You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.
- We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
- If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study.
Where can you find out more about how your information is used?
You can find out more about how we use your data:
- at hra.nhs.uk/information-about-patients/
- our leaflet available to download at the bottom of this page.
- by asking one of the research team
- by sending an email to firstname.lastname@example.org
- by ringing us on 07855 973171
Who can I contact if I have a complaint?
If you want to complain about how researchers have handled your information, you should contact the research team.
If you are not happy after that, you can contact the Data Protection Officer. The research team can give you details of the right Data Protection Officer.
If you are not happy with their response or believe they are processing your data in a way that is not right or lawful, you can complain to the Information Commissioner’s Office (ICO) by:
Visiting their website: www.ico.org.uk, or
Telephone: 0303 123 1113.
ADEPT-2 Study Office
Telephone: 07855 973171
Data Protection Officer
For further information, you can also take a look at this short animation on how data is used in research studies, produced by Connected Health Cities.
ADEPT-2 Privacy Notice (available for download)