Data Confidentiality and Privacy

Will my taking part in the study be kept confidential?

Yes. All the information about your participation in this study will be kept confidential.

Who will get to see the information I give in the questionnaire and how will my information be stored?

Your information will be stored securely, and the answers you give in the questionnaires and other data we record will be stored separately to your personal details. Only the research team will have access to your data and questionnaire responses. We may share anonymised datasets with other research institutions. However, we will never share your questionnaire answers or other data linked with information that would identify you (e.g. your name or date of birth).

We may need to obtain additional details from your records to help our research. In order to do so, we may need to use your name, date of birth and NHS number to request your health and death records from central/national information centres (for example, your medical records if you have consented for us to do so). We will NOT pass any of your contact details (address, email address or phone number) to third parties.

The MoD, Imperial College London and King’s College London are joint data controllers for ADVANCE data.

What will happen to the samples and data you collect on me?

  • Approximately 50 mls of fasted blood will be taken from a vein to measure full blood count, kidney and liver function, cholesterol and sugar levels. 20 mls of blood will be stored for testing levels of inflammation and for testing any future markers of cardiovascular, musculoskeletal or other disease that are not currently available but may be discovered during the course of the study. 10 mls of whole blood/plasma will also be stored for genetic analysis at a later date.
  • 50mls of urine will also be stored for testing of future markers of cardiovascular or musculoskeletal disease.
  • The X-ray and DEXA images and all other data will be kept confidentially in secure filing systems. Experimental records, including paper records and computer files, will be held for a minimum of 15 years after the end of the study in conditions appropriate for the storage of personal information. You have right of access to your records at any time.
  • If participants die during the 20 year study period their previously collected data will still be used in the study.
  • The data collected in this study will strictly be used in this study and other related medical studies only.

Who will have access to my medical data?

By participating in this study you will be consenting, to members of the research team only, to be able to access your NHS medical records (via your NHS number), and military medical records.

What will happen if I don’t want to carry on with the study?

You are free to withdraw from the study at any time, and this will not affect your future treatment in any way. We would just ask that if you do decide to withdraw from the study that you inform the research team. If you withdraw from the study then previous data collected from you will still be used in the research unless you specifically ask for it to be withdrawn.

What is our ‘legal basis for processing’ your data collected for this study, as per the General Data Protection Regulation (GDPR)?

(1) You have actively given us your permission (or ‘consent’).

You may withdraw your consent at any time by contacting the study’s responsible Data Protection Officer – please see the section ‘What are your rights and who can you contact if you have a concern?’ in the Privacy Notice that can be accessed via the link at the bottom of this page. 

By providing us with your personal data, including sensitive personal data such as on your health, you consent to the collection and use of any information you provide in accordance with the purposes stated in this privacy statement. 

(2) It is required for our public purpose as a consortium of research institutions. 

(3) It may be required to protect your (or somebody else’s) life. Clinical data gathered as part of the study may indicate health conditions that you and your GP may need to be alerted to.

The Ministry of Defence privacy notice can be found here.