Privacy Notice
This information was created by the BLISS study team at CTRU.
We want individuals to understand how their personal data is used and protected within the BLISS study. The privacy of individuals data matters to us, and we will treat all this information with care. Individuals can withdraw consent to use of their data in this study at any time (please follow guidance below).
Why is this BLISS study data privacy notice relevant to me?
We are carrying out the BLISS study, which involves data from previous haematology cancer clinical trials managed at the Leeds Clinical Trials Research Unit (CTRU) and is ethically approved research in the public interest.
The multiple myeloma trials included in the BLISS study have closed. Data will not be collected from patients who had previously withdrawn full consent to further data collection on these multiple myeloma trials.
Who is responsible for my information?
The data controller for the BLISS study is the University of Leeds.
All data processing for the study will be in accordance with the 2018 Data Protection Act and in line with the principles of the UK General Data Protection Regulation (GDPR). Personal data will be processed under a lawful basis of ‘task in the public interest (GDPR Article 6, 1(e)) and special categories of personal data (in this case, data about heath, racial or ethnic origin and genetic data) will be processed for scientific research purposes (GDPR Article 9, 2(j)).
If you have any questions about your personal data, you can contact the University of Leeds Data Protection Officer (DPO) on [email protected].
What information will be collected about me?
The BLISS study team would like to collect data from NHS England, including deaths, cancer registrations, treatment and hospital admissions, to enable linkage between haematology cancer clinical trials and healthcare systems data (HSD) to provide a research database. These HSD are collated centrally and supplied by NHS England.
We will only collect information that we need for the BLISS study and will only use it for the study and not for any other purpose.
Who has approved collection of this information?
Collection of this data has been approved by the East of England – Cambridge Central Research Ethics Committee.
The BLISS study also has permission from the Health Research Authority, on the advice of the Confidentiality Advisory Group (CAG), to obtain follow-up information through a linkage with NHS England. This involves sharing a limited amount of personal data (NHS Number, date of birth and sex) with NHS England to obtain linked healthcare systems data.
Why do the BLISS study team need this information?
The BLISS database will be used to evaluate the quality and accuracy of routinely collected HSD for use in blood cancer clinical trial follow-up and to carry out further clinical research on frailty and bone disease in blood cancer patients.
Linked data will be used to undertake extended follow-up of participants in practice changing blood cancer (multiple myeloma) clinical trials.
The BLISS platform will provide relevant data needed to generate evidence required for using HSD in future trials.
This supports our research which we carry out in the public interest.
Who will see my information?
The BLISS database will be held on Leeds CTRU secure storage area which is designated for storage for datasets from third parties including NHS England and only accessible on campus.
Only named staff working directly on the BLISS database will have access to this information.
How will my information be protected?
The BLISS research database and all data we collect will be stored securely and managed by the University of Leeds clinical Trials Research Unit (CTRU).
The Leeds CTRU is accredited with the UK CRC Registered Clinical Trials Unit Network, holds an up-to-date Data Security and Protection Toolkit and has a successful recent record of NHS Digital audit.
Data will be securely managed by the CTRU meeting the requirement to store health data required by NHS England.
The BLISS research database platform will only include de-identified linked data (i.e. researchers analysing the data will not see personal identifiers) to be accessed by the authorised study team only.
No individual patients will be identified in any publications or presentations.
Will my information be shared with anyone?
We will not share your data with anyone else.
We will obtain data through NHS England, who have strict rules about sharing their data. You can find out more at https://www.england.nhs.uk/contact-us/privacy-notice/
How long will my information be kept?
Data received from NHS England will not be retained past the study end date (currently 1st July 2030).
At the end of the study, all data received will be securely destroyed.
What are my rights?
Individuals have the right to opt out of the data linkage for the BLISS study at any time. Please follow the guidance below.
What happens if I want my information deleted from the BLISS study?
Individuals may withdraw consent from the data linkage at any time by following the guidance. Upon notification, all BLISS data processing and data storage for that individual would stop.
Who can I contact if I have any questions?
If you have any questions about how your data will be used, or if you would like us to amend or delete your details, or access what information we hold about you, please contact [email protected].
For more information about what data is used at the Leeds institute of Clinical Trials Research and who to contact in case of a problem, go to https://ctru.leeds.ac.uk/privacy-cookies/. You can also contact the University of Leeds Data Protection Officer via [email protected].