All identifiable data (name, address, date of birth etc.) is held on secure systems within the Secure Data Holding Service, Clinical School, University of Cambridge. This identifiable data can only be accessed by the small CFAS core administrative team. Researchers are only provided with data from which identifiable information has been removed so that individuals cannot be identified.
Participants who agreed to sign the ‘access to medical records’ consent also had an option to have their name flagged at the NHS Information Centre*. For those who agreed to this, the NHS Information centre record the date and cause of death of participants who took part in the study and pass this information on to us. They also let us know if someone has left the NHS i.e. emigrated.
*Please note the NHS information centre has now changed its name to NHS Digital.
How does the data collected about me relate to the new General Data Protection Regulation (GDPR)?
The General Data Protection Regulation (GDPR) is a new data protection law that applies to the UK and the rest of the EU from 25th May 2018. It replaces the existing law, the Data Protection Act 1998.
This law lays out rules and standards for an organisation’s use of personal information relating to living identifiable individuals and will be regulated within the UK by the Information Commissioner’s Office (ICO).
The personal details we hold to be able to contact you (including your name, address, telephone number) are stored within a secure database that is maintained by the Clinical School Computer Service at the University of Cambridge and accessed by only the study team.
The data you provide to us through your interviews is stored separately in an anonymous format and is kept separate from your identifiable contact information.
If you would like to read more about the upcoming change in the law governing data protection, you can find more information by visiting this link: https://www.information-compliance.admin.cam.ac.uk/data-protection/research-participant-data
What if I change my mind?
We would like to thank all our participants for their support and for generously giving us their time. Each person who has taken part really has made a difference to the quality of the study, which is helping us understand how health and well-being change as people grow older. Whilst we are enormously grateful for your contribution we also understand that circumstances change. If for any reason you decide that you no longer want to take part in the study, or would like to withdraw your consent please contact the research team on (01223) 330312. Alternatively you can email the National coordinator at leb22@medschl.cam.ac.uk or write to the team at:
| CFAS |
| Institute of Public Health |
| Forvie Site, Robinson Way |
| University of Cambridge |
| School of Clinical Medicine |
| Cambridge Biomedical Campus |
| Cambridge |
| CB2 0SR |
We thank you for your ongoing interest in the study, and if you have any questions or would like any further information about the study and its results please don’t hesitate to get in touch.