Donor health

Understanding the long-term effects of whole blood and platelet donation. A large demonstration study.

Chief investigator: Dr Emanuele Di Angelantonio
Location/Institution: University of Cambridge
Funder: NHSBT Research and Development Committee
NHSBT research area: Transfusion

Summary

The overall aim of this research project is to link NHSBT donor records to a variety of e-health records. The objective is to address a question of considerable national and international public health importance: what is the balance of any risks and benefits of repeated whole blood and platelet donation by apheresis on major chronic disease outcomes?

Previous studies have been contradictory, suggesting that blood donation could either elevate or reduce the risk of diabetes, certain common cancers, and cardiovascular disease. However, the quality of previous research has been inadequate, even though tens of millions of people continue to donate blood in the UK and worldwide.

Using data already recorded by NHSBT, we are conducting a pilot study to establish whether or not it is possible to link donation records to other health service records. This pilot study, which is being conducted with all the necessary approvals, will support the analysis of whether whole blood and platelet donation has any long-term effect on donor health.

How does the University of Cambridge access and link information from health records for this project?

To understand the health of blood donors—and to track how this change over time—we use medical and other health-related records. This project is using the data from a random selection of 200,000 blood donors to assess whether linkage with health records at this scale is operationally feasible.

The National Health Service (NHS) doesn’t have a single record system and thus information needs to be obtained from various sources to build-up a complete picture. This page describes the different types of data, how we access the data and how we keep the information safe. Each application for access to the data goes through an approval process for compliance with ethical, legal and confidentiality requirements.

Blood donors provide NHS Blood and Transplant (NHSBT) with permission to access medical and other health-related records when they consent to give blood at each session. Information from these records is retrieved using an NHS number, name and date of birth.

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 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 currently receive data about:

Deaths and cancer diagnoses from NHS Digital
Hospital treatment (Hospital Episode Statistics) from NHS Digital

Data controller and legal basis for data processing

NHSBT and the University of Cambridge are the Data Controllers 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)€ 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.

While the data held by the University of Cambridge for the purpose of this study is pseudonymised (stripped of identifiers), if you wish to be removed from the study, in the event that you have been included in the random selection of 200,000 donors, please contact: informationgovernanceteam@nhsbt.nhs.uk

Participants are free to withdraw from the study at any time by contacting: informationgovernanceteam@nhsbt.nhs.uk. 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 (data.protection@admin.cam.ac.uk) or it’s Data Protection Officer (dpo@admin.cam.ac.uk) or the NHSBT Data Protection Team: informationgovernanceteam@nhsbt.nhs.uk

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 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 NHSBT’s Data Protection Team: informationgovernanceteam@nhsbt.nhs.uk