Data Protection
ELVIS COVID-19 Data Protection Information
Hypertonic saline nasal irrigation and gargling for suspected or confirmed COVID-19: pragmatic web-based Bayesian adaptive randomised controlled trial (ELVIS COVID-19)
The EU General Data Protection Regulation (GDPR), along with the UK Data Protection Act, governs the processing (holding or use) of personal data in the UK.
You are reading this as you are considering being a participant on this clinical research study. The information below details what data will be held about you and who will hold or store this.
University of Edinburgh and NHS Lothian are the co-sponsors for this study based in Scotland. We will use information from you 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. The co-sponsors will keep identifiable information about you for up to 3 years after the study has finished.
As a university we use 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 will 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 ask permission to use any information you have given us up to the point when you stop your participation. To safeguard your rights, we will use the minimum personally-identifiable information possible.
Any information that is gathered about you will be stored on a secure University of Edinburgh server that can only be accessed by authorised members of the study team.
Providing personal data directly e.g. verbally, in a questionnaire or from your care provider
The University of Edinburgh and NHS Lothian will use your name, DoB and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. The only people in the University of Edinburgh and NHS Lothian who will have access to information that identifies you will be people who manage the database where the trial data is stored or audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name, DoB or contact details.
The University of Edinburgh and NHS Lothian will keep identifiable information about you from this study for up to 3 years after the study has finished.
Providing personal data indirectly e.g. from your medical records
The University of Edinburgh and NHS Lothian will collect information about you for this research study from your survey answers and daily diaries in the ELVIS-COVID19 website. This information will include your name, DoB, contact details, GP contact details and health information, which is regarded as a special category of information. We will use this information to answer the research question for the ELVIS-COVID19 study.
Use of data for 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.
Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.
Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of healthcare research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.
Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee and/ or the sponsor.
Contact for further information
You can find out more about how we use your information and our legal basis for doing so in our Privacy Notice at www.accord.scot.
For further information on the use of personal data by NHS sites, please link to the Health Research Authority (HRA) website; https://www.hra.nhs.uk/information-about-patients/.
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) at https://ico.org.uk/.
Data Protection Officer contact information:
University of Edinburgh
Data Protection Officer
Governance and Strategic Planning
University of Edinburgh
Old College
Edinburgh
EH8 9YL
Tel: 0131 651 4114
NHS Lothian
Data Protection Officer
NHS Lothian
Waverley Gate
2-4 Waterloo Place
Edinburgh
EH1 3EG
Tel: 0131 465 5444
