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Use of Your Data in Research - UK Data Protection Law

University Hospitals of Derby and Burton NHS Foundation Trust (UHDB) is the study sponsor based in the United Kingdom 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. As an NHS organisation we use personally-identifiable information to conduct research to improve health, care and services. The lawful basis for processing your data is a “task in the public interest” and for “scientific research”. 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 remove your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. As discussed in the participant information sheet, you have the right to withdraw from the study at any time but 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 have a right to view the personal data that we hold about you for purposes of this study. You can request this by contacting us using the contact information given below.

You have the right to object to the use of your data for further analysis. If you wish to assert this right, please contact us using the contact information given below. We will ask you to give a reason for your objection.

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.

UHDB will collect information about you for this research study from your medical records. We will also ask Government services that hold medical information about you (such as NHS Digital, the Office for National Statistics, among others) to provide this information to us. This information will include: your name; NHS number; date of birth; contact details and health information (including details about hospital admissions and any deaths that occur during the study period), which is regarded as a special category of information. We will use this information to investigate factors that may help us to predict which patients with chronic kidney disease (CKD) will go on to develop serious kidney problems or cardiovascular (heart and blood vessel) disease.

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 health and care 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. UHDB will keep identifiable information about you for 10 years after the study has finished.

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.

In this study we will not use your data for automated decision-making or profiling.

You can find out more about how we use your information by contacting the study team on 01332 786 608 or email: dhft.derbykidneystudies@nhs.net.

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). For further information regarding your rights and the laws related to the processing of your data we suggest that you visit the ICO website: https://ico.org.uk

Our Data Protection Officer is Anne Woodhouse and you can contact them at uhdb.dataprotectionofficer@nhs.net