How we use your information
If you are waiting for a transplant or have received a transplant, we need to collect information about you. This page explains how we store, protect and use this information.
What we collect and why
Transferring and storing
- How your information is transferred to us
- Who can see your information
- How we store and protect your information
- How long we keep your information
NHSBT is a special health authority of the NHS. It is responsible for providing a reliable, efficient supply of blood, organs, tissues and other services to the NHS.
Within NHSBT, the Organ Donation and Transplantation (ODT) directorate is responsible for ensuring that donated organs and tissues are matched and allocated to patients who need a transplant in the safest and most appropriate way, according to agreed policies. ODT has specific responsibilities including:
- Managing the UK Transplant Registry– a computer-based record of all organ donors and of individuals who are waiting for or who have received a transplant
- Providing a 24-hour service to the NHS for the matching and allocation of donor organs and making the transport arrangements to get organs to patients for transplant
- Auditing and analysing the results of all organ transplants in the UK and Republic of Ireland to improve patient care and ensure that all transplant units comply with agreed service standards
- Improving donation rates by funding initiatives in the wider NHS
Establishing traceability of every organ donated for the purposes of transplantation in the UK
- Monitoring and reporting compliance with the Human Tissue Act 2004 and The Quality and Safety of Organs Intended for Transplantation Regulations 2012 – a statutory responsibility
- Maintaining the National Organ Donor Register (ODR) for the NHS (computerised register of individuals who have expressed their wishes regarding organ donation)
The UK Transplant Registry is a computerised system set up more than 30 years ago to store information about donors, transplants and transplant patients. It is essential to facilitate allocation and matching of organs and is also used for improving patient care based on robust evidence.
We need to collect certain personal details and clinical information about you such as:
- Address including postcode
- Date of birth
- Ethnic origin
- Country of residence
- Blood group
- Tissue type
- If you receive a transplant a record of your transplant including a link to your donor
- Current and past medical history
- Other specific clinical and physical information
Making your transplant happen
It is important that the data held on individual patients awaiting a transplant is recorded accurately and kept up to date, to ensure that no one is allocated an incompatible organ or is disadvantaged in the matching and allocation process.
All patients in need of a transplant should be registered on the UK Transplant Registry and certain data items must be reported to NHSBT at the time of registration to ensure that a patient appears on the computerised matching run for available organs.
Without this information NHSBT will not be able to offer you a transplant.
After you receive your transplant
There is a current legal requirement under the Human Tissue Act 2004 or Human Tissue (Scotland) Act 2006 (HTA Act), that the use of all organs donated for transplant is reported to NHSBT.
In addition, information relating to transplants and subsequent clinical assessment is very important as analysis of aggregated data provides valuable evidence contributing to the improvement of organ allocation schemes and direct patient care.
These data contribute to ensuring that transplants are carried out as effectively as possible to achieve the best outcome for individual patients.
Specialist advisory groups advise on the data to be collected and agree allocation procedures for all organ types.
Advisory groups comprise surgeons, physicians and scientists who are experts in their branch of transplantation.
Through the Advisory Group structure, the rules governing allocation are kept under review and changes made as necessary.
Your personal and clinical details are sent to us at the time you are registered for a transplant. The details you provide are very important as they will be used to help us match your needs with a suitable donor organ or tissue and to ensure your long-term care needs are met.
This information will also be required if you wish to participate in the National Living Donor Kidney Sharing Schemes.
At the time of your transplant, the law requires that your full name, along with the date and time of your operation, together with specific clinical information about you and the donation are reported to NHSBT.
Your postcode is recorded to assist the NHS in planning effective and equitable transplant services. Your home address will only be used when absolutely necessary as an aid in confirming your identity.
Details of your ethnicity, age and sex are collected, along with other clinical information, to help with monitoring and developing fair and effective allocation schemes as well as other analyses to improve patient care. As part of the NHS, NHSBT is required to collect ethnicity to ensure equity of access to transplantation.
Your information will be sent on a completed paper form in the post or by fax, using a web based registration system or other electronic transfer of computer records.
Some registrations take place using a cloud-based registration system. Registrations sent to us in this way will be transferred to a server in the European Union (EU) before onward transmission to NHSBT. All information is encrypted in transit and whilst stored in the EU based servers.
Only certain members of staff are authorised to see your information and very few are authorised to see your personal details.
Those who are allowed to see personal data include staff responsible for maintaining information on the UK Transplant Registry and those responsible for offering and allocation of organs.
All staff dealing with person identifiable data work to strict guidelines surrounding the sharing of information. Those members of staff who analyse the patient data do not routinely have access to patient names.
NHSBT security processes are in line with the requirements of the legislation and NHSBT best practice including, and not limited to, the Data Protection Act 1998 and the General Data Protection Regulations. All staff also have a confidentiality clause in their contracts and annually complete mandatory Information Governance training.
The information, whether supplied on paper forms or electronically, will be stored on the UK Transplant Registry. Paper forms will also be stored on a secure document imaging system before being shredded.
Some of your information will be submitted on or transferred to a cloud based system. This information will be stored on a server in the European Union (EU) and will be encrypted.
Information security is very important to us, and we have put in place a range of measures to protect your information. The database can only be accessed by authorised users who have been given appropriate security clearance.
To avoid any delay in searching for your information you are given a unique identification (ID) number. Whenever possible, we use this ID number and/or your NHS/Community Health Index (CHI) Number in any communications about you. Your personal details (e.g. name and date or birth) are only used by us for allocation purposes and on other occasions when it would not be safe enough to only use your ID number.
All organ transplant records are also retained for a minimum period of 30 years.
NHSBT can retain records for longer than the minimum period so long as there is a justifiable reason.
Your information will always be stored securely with access restricted to only those staff with appropriate and justifiable reason to access them.
You can request a copy of your data free of charge by emailing customer services at firstname.lastname@example.org
Currently NHSBT shares information with other professional organisations which have an interest in improving care for transplantation patients and maximising transplant outcomes.
The professional organisations NHSBT shares your information with include, but is not limited to:
- UK Renal Registry and the Scottish Renal Registry
- Cancer registries
- NHS Digital for NHS number matching and links to HES and other national datasets
- NHS National Services Scotland for CHI number matching
- Office of National Statistics for death notifications
Organisations Outside the UK:
- International transplant registries such as European Liver Transplant Registry (ELTR), Collaborative Transplant Study (CTS)
If you are registered for a liver, heart or lung transplant none of the information transferred to relevant organisations can identify you individually. For patients registered for a kidney your personal details are only be shared once to set up database links and establish a unique ID number. This enables further data exchange with the Renal Registry which does not involve patient identifiable data.
To ensure that you are registered correctly and that the information we hold about you is accurate and up to date NHSBT will also share some of your information with other transplant centres in the UK.
Your UK Transplant Registry information may be linked to other information sources, including central NHS databases such as Hospital Episode Statistics (HES), which stores information on when people go to hospital and the care they receive. This helps to provide a fuller picture of the care transplant patients receive.
We will send your information to NHS Digital and NHS National Services Scotland to ensure that we have the correct NHS and/or Community Health Index (CHI) number for you.
If you are participating in any of the National Living Donor Kidney Sharing Schemes information will be shared between Transplant Units and the Human Tissue Authority to enable you to participate in the scheme(s).
The Data Protection Act 1998 gives you the right to see the information about you that is held on computer or in paper records.
This is known as “right of subject access”. If you wish to see the information that NHSBT holds about you, your request should be made in writing (by letter or email) to:
NHS Blood and Transplant
Filton Blood Centre
North Bristol Park
You may ask for more details from you to make sure that NHSBT gives the correct information to the right person.
NHSBT staff will not disclose any personal information to you over the telephone.
If you have further questions regarding consent, you can speak to a member of the clinical team caring for you.
Alternatively, you can contact the NHSBT National Call Centre on 0300 123 2323 who will ensure your enquiry is passed to a relevant member of staff to answer.