Electronic health record linkage in the main STRIDES trial
STRIDES is a study aiming to improve donor experiences within National Health Service Blood and Transplant (NHSBT). For the duration of the STRIDES study, de-identified donation and health record information about you will be used to investigate if donor experiences have been improved.
A single table linking each participant’s anonymous identification number (ID) to their NHSBT Donor Number, NHS number and other information that directly identifies them is stored in a separate, password protected location at NHSBT which may only be accessed by designated study data managers.
The above identifiable information is then passed to NHS Digital, where it is linked to the electronic health records and given an anonymous ID. The information is then stripped of identifiers (e.g., NHS number, name, date of birth, etc) and the health record data is passed to the University of Cambridge along with the anonymous ID. The University of Cambridge will never have access to the personal identifiable data.
Access to the study database at the University of Cambridge is password protected and is only available to named researchers working on the studies under the direct supervision of the senior scientific investigators.
We will receive the following data from NHS Digital:
- Hospital treatment (Hospital Episode Statistics)
- Deaths registrations
- Imaging data
We intend to retain the data until analysis of the study results is complete. This is subject to data sharing agreements with external data providers and participants’ right to withdraw.
Data Controller and legal basis for data processing
The University of Cambridge is the Data Controller for this study. A Data Controller determines the purposes and means of the processing of personal data. Personal data (including health record data) is processed for scientific research purposes as part of the University of Cambridge’s public task under articles 6(1)(e) and 9(2)(j) of the General Data Protection Regulation (GDPR). The public interest nature of the research was assessed when reviewed by a Research Ethics Committee and the public bodies providing the funding.
Health data (e.g., the datasets received from NHS Digital) is classified as a special category of personal data under the GDPR.
Participants are free to withdraw from the study at any time by speaking to staff at your next blood donation session or the STRIDES admin team (firstname.lastname@example.org). The University of Cambridge’s Data Protection Notice contains more details about the legal basis for our processing of information and your rights. If you need further assistance, please contact the University’s Data Protection Team (email@example.com) or it’s Data Protection Officer (firstname.lastname@example.org).
If you are unhappy with how we have used your data, you can complain to the Information Commissioner’s Office (ICO).
Postal address: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF
Helpline number: 0303 123 1113
How can I access my personal information?
Various rights under data protection legislation, including the right to access personal information that is held about you, are qualified or do not apply when personal information is processed solely in a research or archival context. This is because fulfilling them might adversely affect the integrity of, and the public benefits arising from, the research study or project.
The full list of (qualified or inapplicable) rights is:
- The right to access the personal information that is held about you by the University (further details)
- The right to ask us to:
- Correct any inaccurate personal information we hold about you
- Delete personal information
- Restrict our processing or to object to processing (including the receipt of direct marketing)
- Receive an electronic copy of the personal information you provided to us
If you have any questions regarding your rights in this context, please contact email@example.com