How we use your data

• The countries your data will be shared with have an adequacy decision in place. This means that we know their laws offer a similar level of protection to data protection laws in the UK 
• We use specific contracts approved for use in the UK which give personal data the same level of protection it has in the UK. For further details visit the Information Commissioner’s Office (ICO) website 
• We do not allow those who access your data outside the UK to use it for anything other than what our written contract with them says 
• We need other organisations to have appropriate security measures to protect your data which are consistent with the data security and confidentiality obligations we have. This includes having appropriate measures to protect your data against accidental loss and unauthorised access, use, changes or sharing 
• We have procedures in place to deal with any suspected personal data breach.  We will tell you and applicable regulators when there has been a breach of your personal data when we legally have to. For further details about UK breach reporting rules visit the Information Commissioner’s Office (ICO) website. 

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.  

We will keep your study data for 15 years following the end of the research project, following the guidelines from the Medical Research Council.    

After 15 years, the research team will de-identify the personal data it has collected from, or about, you in connection with this research project, with the exception of your consent form.

Anonymised information may be published in support of the research project and/or retained indefinitely, where it is likely to have continuing value for research purposes.  

To make best use of resources we will share data (anonymised to exclude any personal details) with different groups of researchers from the NHS, universities and commercial companies, both within the UK and abroad. However, we would stress that those organisations will never obtain access to personal/ identifying information (for example, your name, address, date of birth). This information will be de-identified and kept strictly confidential.  

With your consent, we may also link your data to routinely collected, anonymised datasets. One example of this is the Secure Anonymised Information Linkage (SAIL) databank at Swansea University. SAIL contains anonymised health and social care data for the population of Wales. This will be linked in an anonymous format (this will not include your personal details such as your name and address) and is undertaken in line with UK General Data Protection Regulation (UK GDPR) 2018, the Data Protection Act (2018) and University Governance.  

If you do decide to take part you are still free to withdraw your consent to participate in the research project at any time, without giving a reason, even after signing the consent form. Please contact us using the details at the end of this form. We will ask you whether you want us to destroy the data collected so far and stop future communication or if we can keep the data and not contact you again. 

It will not be possible to withdraw any anonymised data that has already been published or in some cases, where identifiers are irreversibly removed during the course of a research project or for data linkage, from the point at which it has been anonymised.    

You have the right to ask us to access, remove, change or delete data we hold about you for the purposes of the study. We might not always be able to do this if it means we cannot use your data to do the research. If so, we will tell you why we cannot do this.  

You will not have any claim to any future commercial use of results from the study in which your data has been used.