How we keep your information safe
We will keep all information collected about you as part of Healthspan Connect strictly confidential and we will store it according to the UK General Data Protection Regulation 2018 and Data Protection Act 2018.
We will store all your data using a unique code, instead of your name. Your personal details, such as your name, address, full date of birth, and contact information, will be kept in a separate, secure database, which may include storage on a secure third-party server.
Only authorised Healthspan Connect researchers and staff will be able to access this, and only for things like managing your participation in the study in question.
When we share your data with researchers, it will be pseudonymised, meaning it’s linked only to your unique code, not your name.
We may also share your birth month and year, but nothing that can directly identify you. You cannot be personally identified from the data we share. We treat it as a potential criminal offence to misuse data, including trying to re-identify someone without permission.
Only the test results that we send to you (and your GP, where applicable) will contain any personal information.
FAQs
How will you use my information?
We will need to use information from you and, if you consent, from your medical records for this research project. This information will include your initials, NHS number, name, contact details and date of birth. People will use this information to do the research or to check your records to make sure that the research is being done properly. People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead. King’s College London is responsible for looking after your information.
What will happen to my samples and data?
We will store all data and samples you provide in our Healthspan Connect Biobank.
We will store your clinical, genetic and questionnaire data in a secure electronic database so it can be used in this study and future research projects.
Your biological samples will be processed and stored at our laboratory (run by the Department of Twin Research and Epidemiology, based at St Thomas’ Hospital, London) or in one of our approved biorepositories.
How will you store my information?
We will keep all information about you safe and secure by storing all your data using a unique code, instead of your name. Your personal details, such as your name, address, full date of birth, and contact information, will be kept in a separate, secure database. Only authorised Healthspan Connect researchers and staff will be able to access this, and only for things like managing your participation in the study in question.
We will store your samples and data in the Healthspan Connect Biobank.
How will you use my information after the study I take part in ends?
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.
Where can I find out more about how my information is used?
You can find out more about how we use your information using the links below, or by contacting the research team:
• The Health Research Authority
• emailing the research team at healthspan@kcl.ac.uk
• emailing our Data Protection Officer at info-compliance@kcl.ac.uk
All the information we collect will be kept safe and secure, following the UK General Data Protection Regulation 2018 and Data Protection Act 2018, and all samples will be stored according to the rules set out in the Human Tissue Act 2004.
How is my data shared?
We may share data with third-party platforms for research purposes. These platforms will be described in each sub-study Volunteer Information Sheet and will meet King’s College and Healthspan Connect data requirements for data storage, including General Data Protection Regulation 2018.
Sometimes we work with service providers to help us to carry out our research (e.g. to send out large numbers of postal kits), and we may need to share some of your personal information with them, but only under strict contracts.
What systems do you use to collect data?
We use the following systems to collect and store participant data – REDCap, Qualtrics, Mailchimp, MyFood24 and Microsoft.
You can find more information on our data collection systems on our Privacy Notice.
For more information on data security and privacy
More information about how we handle your data is available in the Privacy Notice and from the King’s College London Information Compliance team and Data Protection Officer, available on info-compliance@kcl.ac.uk.
You can also read more on the Participant Information Sheet.