Data FAQs

We will follow established ethical and legal practices, and all information collected about you during the study will be kept strictly confidential. Only members of the research team (University of York and University of Nottingham), the Sponsor (South Tees Hospitals NHS Foundation Trust) and the NHS Trust will have access to your personal data.

Data collected for the study will be looked at by authorised persons who are organising the research and to check that the study is being carried out correctly. All persons will have a duty of confidentiality to you. We will keep all information about you safe and secure. We will write all our reports in a way that no one can work out that you took part in the study.

Any information we collect about you will be stored in a secure location and electronically on a password protected database. We will store personal data, separate from the questionnaires, and interview recordings/transcripts, such as:

• Your name
• Address
• Telephone number
• Email address
• NHS number

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.

This data will be held for up to 5 years in case we need to contact you about the findings of the study unless you ask us not to contact you. Your personal data will be disposed of securely after it is no longer necessary to contact you. Some questionnaires may also ask for:

• Age
• Gender
• Date of surgery
• Employer details
• The first part of your postcode

All information about you will have your name and address anonymised and a unique code will be used to help protect your identity.

As requested by the funder (HTA), we will ask for your consent to link the data collected from the study to routinely collected health data stored in national databases (via your NHS number), and to share this information anonymously with other researchers. Your personal details will not be provided to anyone else or used for any other purpose.

All other research data will be stored securely for 5 years, and after this time will also be disposed of securely. During this time all precautions will be taken by all those involved to maintain your confidentiality.

If you wish to raise a complaint on how we have handled your personal data, you should contact the research team. If you are not happy after that, you can contact our Data Protection Officer who will investigate the matter. Our Data Protection Officer is Durham Burt. He can be contacted at: [email protected]  

If you are not happy with our response or believe we are processing your personal data in a way that is not right or lawful you can contact the Information Governance Team at the Sponsor’s organisation: [email protected] in the first instance, who may escalate the issue to either the Data Protection Officer or Caldicott Guardian. If you remain unhappy, you can complain to the Information Commissioner’s Office (ICO) at https://ico.org.uk/.

The results of the study may be presented to other researchers, at conferences and through publication in scientific journals. Results of the study may also be used to support other research in the future, such as health-based research and may be shared anonymously with other researchers. We will ensure that it will not be possible for anyone to identify you from the published findings of the study by only sharing your participant ID number.

If you wish to know the results of the study, we can send you a summary of the findings.

The research is organised by South Tees Hospitals NHS Foundation Trust in collaboration with the University of Nottingham and the University of York. The research is funded by the National Institute for Health and Care Research, Health Technology Assessment Programme (NIHR133880).

All research in the NHS is reviewed by an independent group of people, called a Research Ethics Committee (REC), to protect your interests. This study has been reviewed and given favourable opinion by the [xxxxxxx Research Ethics Committee (xxxxxxx)] and approved by the Health Research Authority (HRA) (Ref Number xxx).