BRITISH SOCIETY OF GASTROENTEROLOGY: To link the registry of Inflammatory Bowel Disease (IBD) patients in England to HES and in doing so produce a source of high quality information that will be able to provide more a

Data-sharing agreement from NHS Digital registers of approved data releases, 2014–2019. Evidence status: source reported.

Organisation

BRITISH SOCIETY OF GASTROENTEROLOGY

Source reference

DARS-NIC-344511-H6N5B-v1.5

Jurisdiction

England

Licence

Open Government Licence v3.0, subject to NHS England terms and exclusions

To link the registry of Inflammatory Bowel Disease (IBD) patients in England to HES and in doing so produce a source of high quality information that will be able to provide more accurate identification of the health outcomes and health care utilisation of IBD patients. Outputs from this registry would then be used for feeding into national service development planning and fulfilling national audit, improving IBD standards and quality improvement benchmarks. There are currently three identified outputs which can be categorised as follows: 1. A Trust level feedback report 2. Annual registry rep

Register reference

DARS-NIC-344511-H6N5B-v1.5

Agreement period

not published to no end date published

For commercial purposes (as marked in the register)

Not stated

Release files listed by NHS England

33

Data approved

• Hospital Episode Statistics Admitted Patient Care
• Hospital Episode Statistics Accident and Emergency

Objective, as published

To link the registry of Inflammatory Bowel Disease (IBD) patients in England to HES and in doing so produce a source of high quality information that will be able to provide more accurate identification of the health outcomes and health care utilisation of IBD patients. Outputs from this registry would then be used for feeding into national service development planning and fulfilling national audit, improving IBD standards and quality improvement benchmarks. There are currently three identified outputs which can be categorised as follows: 1. A Trust level feedback report 2. Annual registry report 3. A research project entitled ‘Maximising the value of the UK IBD Registry for service delivery, audit and research’

Expected benefits, as published

First quarterly feedback – From January 2017 The provision of information on service activity, cost, clinical treatments and patient outcomes to participating hospitals will enable effective benchmarking and comparison of local services against other IBD services. The information will improve patient care by enabling participating organisations to identify their own strengths and weaknesses and plan improvements to their patient pathways and service organisation. First Annual Report – September 2017 At present, information on IBD is scarce at national level. As such, policy makers are unable to take an informed view on standards and clinical practice across the country and are unable to develop evidence based policies based on national information. The development of the annual report is…

Source: https://webarchive.nationalarchives.gov.uk/ukgwa/2019/http://content.digital.nhs.uk/media/24614/Release-Register-March---May-2017/xls/Release_Register__March_-_May_20171.xlsx. Captured 2026-10-30.

Limitations: Agreement as recorded in an NHS Digital register of approved data releases (2014–2019), retrieved from the UK Government Web Archive. That register lists releases made in its period and the agreement's purpose statement as it then stood; it gives no agreement dates, and the agreement may have changed since. Imported only where a paper quotes a reference no current register holds.