WAVE transparency

What will happen to the information collected about me during the research?

Keele University is the sponsor for this study, which is based in the United Kingdom. Keele University will be using information from you in order to undertake this research and will act as the data controller for the data collected during this study.

This means that we are responsible for looking after your information and using it properly. Keele University will keep the information you provide for 10 years after the research has finished. This is normal in research of this nature.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate.

If you withdraw from the research study after agreeing to take part, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally identifiable information possible.

You can find out more about how we use your information and read our privacy notice at information governance for the public.

Or you can contact Keele University’s Data Protection Officer at: dpo@keele.ac.uk

We are committed to protecting the privacy and security of the personal information of all participants in our research. If you respond to this invitation, Keele Clinical Trials Unit will use your name and contact details to contact you about this research study. Authorised individuals from Keele University and regulatory organisations may look at your healthcare and research records to check the accuracy of the research.

The only people at Keele University who will have access to information that identifies you will be people who need to contact you about the research or who audit the data collection process.

The data you provide will be "personalised"; this means that the people who analyse the data that you provide will not be able to identify you and will not be able to find out your name and contact details. Your identifiable data will be securely stored by Keele CTU and will not be used beyond these purposes. On joining the study, your information will be securely stored under a unique study number. Depersonalised data held on this basis may be used in other research studies, subject to appropriate approvals.

Any information that you do provide which contains your personal identifiable details will be securely stored at Keele CTU at Keele University and consent forms will be stored separately to the other data that you provide.

Our procedures for handling, processing, storage of and destruction of data are in line with relevant regulatory requirements. To ensure electronic data are stored securely, it will be held on networks approved by a government-backed cyber security scheme. Paper records are stored securely within lockable filing cabinets and/or in strictly restricted access rooms. Keele Clinical Trials Unit also operates a key code entry system to ensure only appropriate persons have entrance to the Unit.

In accordance with the University of Keele, the Government’s and our funders’ policies we may share our research data with researchers in other Universities and organisations, including those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoid duplication of research) and to understand the bigger picture in particular areas of research. Data sharing in this way is anonymised (so that you could not be identified). Any requests for access to the anonymised data from anyone outside of the study team will follow Keele University’s Health and Social Care Quality Management System Standard Operating Procedure for data sharing.