NHS Digital Data Release Register - reformatted

Royal Free London NHS Foundation Trust

Project 1 — DARS-NIC-147841-1G36R

Opt outs honoured: N, Y

Sensitive: Non Sensitive, and Sensitive

When: 2016/04 (or before) — 2016/11.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Scottish NHS / Registration
  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report

Objectives:

Are to arrive at conclusions regarding prognosis of Amyloidosis, its natural history and the effects of Radioisotope Scanning treatment.


Project 2 — DARS-NIC-148034-SCKLL

Opt outs honoured: No - consent provided by participants of research study (Consent (Reasonable Expectation))

Sensitive: Sensitive, and Non Sensitive

When: 2017/03 — 2019/05.

Repeats: Ongoing, One-Off

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c)

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report

Yielded Benefits:

An initial analysis of mortality in patients with Barrett's oesophagus was done and published in 2012. This showed that patients with Barrett's had a greater mortality from oesophageal adenocarcinoma than the general population but not from any other cause of death. It is important to repeat the analysis with greater numbers, over a longer time period and a greater geographical area. The information that patients suffering from Barrett's oesophagus have a greater mortality from oesophageal adenocarcinoma but no other cause of death. This work has been cited many times since publication, providing a strong evidence base for other research and management of Barrett's patients. If either confirmed or refuted the information will have a big impact on the type of care given to Barrett's oesophagus sufferer as they will not need to have screening or surveillance for any other cause of either mortality or morbidity.

Objectives:

The data supplied to the Royal Free Hospital will be used only for the approved medical research project - MR901 - MORTALITY IN BARRETT'S OESOPHAGUS PATIENTS

Expected Benefits:

It is important to reanalyse the data with much larger numbers and at least one other centre, in order to confirm the findings and establish that this is not a phenomenon confined to Rotherham. The results would impact the management of Barrett's oesophagus patients. They have already influenced British Society Guidelines and some clinicians have made individual changes to their practice. Long term the risk of BO patients progressing to oesophageal adenocarcinoma will be reduced resulting in both lives being saved and the cost to the NHS being reduced. There is no final target date but 2 years in the first instance.

Outputs:

A study using causes of mortality in Barrett's patients compared to the general population was accepted for oral presentation at a conference in the USA and the abstract published in Gastroenterology in 2010. A full paper was published in Endoscopy in 2012 . The UKBOR hope to repeat this with information from additional death certificates. These results will be invaluable for strategies on the management of patients with Barrett's oesophagus and for strategies to prevent progression to cancer. If confirmed by a larger and geographically more extensive study clinicians could be confident that the increased mortality in BO patients was only from oesophageal adenocarcinoma. The results have been used in the British Society of Gastroenterology Guidelines for the diagnosis and management of BO, and by gastroenterology clinicians, surgeons and nurses. These are research results for use by medical personnel and not patient friendly. However the publications list is freely available on the BOUK website, the charity that funds UKBOR. All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Processing:

Patient identifiers (NHS number, study ID, name, gender, date of birth and address) were sent to the predecessor bodies (NHS Information Centre and the General Register Office) for linkage. Death details for any patient who had died was sent on a yearly basis in March and was recorded in the appropriate fields on the UKBOR database held at the Royal Free Hospital. In the future this information will be analysed, either as a cohort or case control studies, in line with the objectives above. Identifiers are removed during the course of the analysis and no one can be identified from the outputs published. For this agreement, the cohort is already flagged by NHS Digital, so no identifiers will flow into NHS DIgital. The data will not be linked with any record level data other than the UKBOR data referred to above. The data will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).