Data Access Policy

Policy for access to data and information through Statistics & Clinical Studies

1. Introduction and scope

In order to fulfil the 2005 Directions, NHS Blood and Transplant (NHSBT) collects, records and analyses data that can be anonymised and/or personally identifiable or sensitive concerning potential and actual organ donors, patients registered for transplant, transplant recipients including long-term follow-up information and individuals registering on the NHS Organ Donor Register (ODR).

Data collected nationally enables NHSBT to fulfil its statutory obligations with regard to the effective use of organs, equitable organ allocation and performance monitoring of transplant centres in terms of patient and graft outcomes as well as support patients and the public with relevant information in a timely and transparent manner NHSBT receives many requests for data on activity and outcomes to address questions of interest to colleagues engaged in transplantation, the media and other stakeholders.

NHSBT is keen to make data available and support the public and health care professionals to access data in a timely and appropriate manner. This policy clarifies how data held by NHSBT can be accessed and used by individuals or groups within NHSBT, with advisory roles to NHSBT, within the wider NHS, from other organisations with an interest in organ donation and transplantation and by members of the public in line with NHSBT's legal obligations.

This policy does not cover

  • data that are provided in order to allocate organs safely and appropriately for transplant
  • data that are provided to inform care for patients on an individual basis
  • data that are sent to other transplant registries as agreed with, and on behalf of, UK transplant centres
  • analyses undertaken to support NHSBT's Advisory Groups (AG) and their sub-groups, where the work is part of an agreed programme of work
  • requests for data or information that are solely handled by the Communications Directorate; only published information will be provided by them without necessarily consulting others within NHSBT.
The policy relates to data concerning donation, transplantation and outcomes of all organs (kidney, pancreas, liver, heart, lung, small bowel) but additionally relates to pancreatic islet and ocular tissue donation and transplantation and the use of Ventricular Assist Devices (VADs) as a bridge to heart transplantation. The policy will also apply to data collected relating to potential and actual organ donation, registration, transplantation and outcome of solid and vascular composite allografts.

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