We take data confidentiality seriously at the study and use four guiding principles when handling and processing the data that we receive.
Everyone working on CAPS has completed relevant data and information protection training prior to working on the study and with data. In addition, we have also completed a training course called Good Clinical Practice, which has been designed by the National Institute for Health Research, to ensure that everyone is maintaining excellent standards when looking after your data. We update our training every 2-3 years, to make sure that we’re aware of any new regulations or guidance. Each year we sign a confidentiality agreement as an extra safeguard.
All the data and information that we collect is reviewed for use by NHS Digital (formerly Health and Social Care Information Centre; HSCIC) who ensures our handling of digital information is maintained at the highest standard. The University of Manchester has its own Cyber Security and Data Protection Policies, which we follow. This includes guidelines on how data is handled, including confidentiality, integrity and availability and the use of encryption tools for the protection of identifiable data. The physical paper questionnaires that participants fill out for the study are kept locked and secure at the CAPS offices. These offices have a 24-hour security team and are fitted with an alarm system. Only approved people have access to these offices and all staff operate by a “clear desk and clear screen” policy.
The CAPS team ensure that we meet very high standards in data governance and comply with the General Data Protection Regulation (GDPR). We work closely with the Research Governance Office at the University and as part of that regular audits are carried out by The University of Manchester Research Governance Office. External audits can be performed at any time by bodies such as; NHS Digital, the Medicines and Healthcare products Regulatory Agency (MHRA) or the National Institute for Health Research (NIHR).
The results from individuals are combined and analysed as a whole to produce research papers or national/international conference presentations. The researchers who work on with the data will never have access to participants’ personal data or information because the data is anonymised.
Please see our patient information sheet for the most up to date information around CAPS data handling and usage:
If you have any concerns about any aspect of this study, you should speak to the researchers who will do their best to answer your questions. If they are unable to resolve your concern or you wish to make a complaint regarding the study, please see below.
If you have a minor complaint, you need to contact the researchers in the first instance. Please get in touch with Prof Kimme Hyrich: