Privacy Policy

GDPR and Personal Data

The laws about how personal data can be used have recently changed so we need to explain to you what this means for the data you have contributed.

Alder Hey Children’s NHS Foundation Trust is the sponsor for this study based in the United Kingdom; they have delegated the day-to-day management of the study to the Clinical Trials Research Centre (CTRC), which is part of the University of Liverpool. We will be using the information we have collected from you in order to undertake this study and Alder Hey Children’s NHS Foundation Trust and the University of Liverpool will act as the data controllers for this study. This means that Alder Hey Children’s NHS Foundation Trust and the University of Liverpool are responsible for looking after your information and using it properly. Alder Hey Children’s NHS Foundation Trust and the University of Liverpool will keep identifiable information about you for 10 years after the study has finished.

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. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Your NHS Hospital will make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from Alder Hey Children’s NHS Foundation Trust and the University of Liverpool and regulatory organisations may look at your research records to check the accuracy of the research study. Your NHS site have passed these details to Alder Hey Children’s NHS Foundation Trust. The only people in Alder Hey Children’s NHS Foundation Trust and the University of Liverpool who have access to information that identifies you will be people who need to contact you to audit the data collection process. The people who analyse the information are not able to identify you and will not be able to find out your name, or contact details.

Your NHS Hospital will keep identifiable information about you from this study for 10 years after the study has finished.

How we use your information

Alder Hey Children’s NHS Foundation Trust and the University of Liverpool take great care to abide by our legal and moral obligations when handling your personal and healthcare data. Due to changes introduced in the EU General Data Protection Regulation (GDPR), we would like to provide you with information on the lawful basis on which we are processing your data. The lawful basis for the processing of your personal data for the research study which you have participated in is a “task in the public interest”.

As a NHS organisation / university, Alder Hey Children’s NHS Foundation Trust and the University of Liverpool use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisations, 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 keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research, 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.

Contacts

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). The Data Protection Officers for Alder Hey Children’s NHS Foundation Trust and the University of Liverpool are Joanne Fitzpatrick (Alder Hey Children’s NHS Foundation Trust) and Victoria Heath (the University of Liverpool), and you can contact them at:

Joanne Fitzpatrick: info.gov@alderhey.nhs.uk .

Victoria Heath: LegalServices@liverpool.ac.uk .

Other uses of information

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.