PRIVACY NOTICE

Important privacy information

The University of York is the sponsor for this study, as a whole, based in the United Kingdom. The University of York is the ‘Data Controller’. The GDPR legal basis for article 6(1e) [task in the public interest], and article 9(2j [processing special categories of data, (health data), for research] have been reviewed and we have selected the most appropriate lawful basis for processing your data. The day-to-day management for the trial is delegated and split across the Department of Health Sciences at the University of York, the Clinical Trials Research Unit (CTRU) at the University of Sheffield and the University of Exeter Medical School. Together these organisations will be using information from you in order to undertake this study. The University of York will keep identifiable information about you for 10 years after the study has finished.

For the NHS Digital study the contact is Amanda Mason-Jones, amanda.mason-jones@york.ac.uk, +44 (0)1904 321290. The data protection officer is Durham Burt, dataprotection@york.ac.uk, +44 (0)1904 323869. We will use information from you and your NHS digital records (if you gave us permission to access these records on the E-SEE Trial consent form) in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. NHS Digital data will only be accessible and processed by the University of York.

Find out more about how we use your information

The University of York uses personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we use your data in the ways needed to conduct and analyse the research study. 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 study, we will keep the information about you that we have already obtained. To safeguard your rights, we use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

The Research teams at the University of York and the University of Exeter have collected information from you for this research study (and from your NHS digital records, if you gave us permission to access these on the E-SEE Trial consent form) in accordance with our instructions.

The University of York and the University of Exeter will use your name, and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your participation. The only people from the University of York or the University of Exeter who will have access to information that identifies you will be people who need to contact you about the research. Individuals from the University of York or Sheffield University and regulatory organisations may look at your research records to audit the data collection process, oversee quality and check the accuracy of the research study. The people who analyse the information will not be able to identify you and will not be able to find out your name, NHS number or contact details.

Where you gave consent to do so on the E-SEE trial consent form, The University of York will collect information about you for this research study from NHS Digital. This will involve linking the data that NHS Digital hold through information that identifies you to them. This information will include the number of times you or your child have required access to services including admissions to hospital. We will be looking at number of times you or your child have required access to services. Access to this data will enable us to look in a bit more detail at any benefits for health and wellbeing by participating in this trial. Where you gave consent to do so on the E-SEE trial consent form, we may access these medical records again in the future. The reason we would like to look at these records is because it will tell us about whether there are any longer-term benefits to health and quality of life. This information can only be accessed if you gave your permission on the E-SEE trial consent form. Your name, postcode, date of birth, NHS number and those of your baby will be used to access this data.

How will this impact future research?

When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

This information will not identify you and will not be combined with other information in a way that could identify you. The information will only be used for the purpose of health and care research, and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance.

How can I make a complaint?

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Our Data Protection Officer is Durham Burt and you can contact him at dataprotection@york.ac.uk