The UK IBD Registry

Local Benefits and National Impact

Authors: Fraser Cummings , Stuart Bloom , Richard Driscoll , Claire Munro
a

Inflammatory Bowel Disease (IBD)

The prevalence of IBD in the UK is unknown but has been estimated to be
approximately 0.5%, meaning there are potentially 300,000 IBD patients
in the UK(1). IBD patients experience a significant burden in absence from
education and work and long term productivity(2).
The course of IBD ranges widely, and many patients are managed as
outpatients in a hospital setting. Medical interventions are inevitable for
nearly all patients with a significant proportion requiring surgical treatment
to give symptomatic relief, improve daily functioning and quality of life.
The advent of biologic and the new biosimilar therapies has added to the
complexity and costs of treatment.

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The UK IBD Registry

IENTS
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P Safety

The IBD Standards (2009 and 2013) recommended that IBD services
should use data, IT and audit effectively in order to optimise clinical
management. IBD Standard E2 states: IBD services should implement an
electronic clinical management system which records patients disease
histories and treatments(3).
The IBD Registry was formally launched in June 2013 with the aim of
taking demographic and clinical information about IBD patients recorded
electronically at hospital level and making this available for analysis in a
central registry database together with the relevant healthcare utilization
data from Hospital Episode Statistics (HES) and other NHS databases
The IBD Registry board set out the following criteria for the project:
l It must be accessible to every hospital in the UK
l All stakeholders must benefit (patients, clinical teams, local
management, commissioners)
l Realism about resources: it must be achievable given current levels of
clinical and staff admin time and fit with local and national budgets
l Must integrate with NHS policy, practice and systems in each of the UK
nations

E x p e r i e nc e

LOCAL
CLINICIAN/
PATIENT
ENCOUNTER

ELECTRONIC
RECORD

REGISTRY
DATA

PAPER
RECORD

AU

The Registry project team recognized that, as well as establishing the

system for transferring data to a central registry - in itself a complex
task to meet all the necessary Information Governance and NHS Policy
requirements - the project had an opportunity to significant improve
the quality of patient care by using data, recorded in a systematic way,
and developing the tools and analysis to modernize patient care. This
required the development of a clinically useful electronic record and
patient management system (PMS) to capture data at the point of patient
contact. These tools had to deliver:
l tangible patient benefits at the point of care
l improved access to relevant clinical information in real time
l improved local utility of patient information
l efficient transfer of data into the UK-wide Registry database

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Health & Social Care

Information Centre (HSCIC)

IBD Registry web server

hosted by In Technology

(accredited data safe haven)

Receives and validates the
data files (demographics &
clinical data)
Verifies the patients identities
Converts the patient
identifiable data into a dataset
with demographic categories
(e.g. month of birth, LSOA
location code)
Allocates Registry identifier
Forwards data from other
datasets as and when
available e.g. death, cancer
HES data etc.

The Registry Database for

research and audit

Web-portal databases
Separate database for each
Trust or Research Project
Output files
to HSCIC for
anonymisation
Over N3

Patient identifiable data

encrypted and accessed only by
Trust users
Registry staff do not have access

Local Trusts

All exported through NHS Network to HSCIC.

Existing IBD database

(e.g Ascribe, Rotherham)
Clinical staff holding
patient identifiable data

Hospital or GI Dept
IBD database in
current use

(on Trust Servers)

Clinical staff processing
patient identifiable data

IBD Registry PMS

(InfoFlex software
platform, data held on
hospital servers)
Clinical staff processing
patient identifiable data

N3

Web Portal access

(Registry data set,
future audit data or
research data)
Patient identifiable
data

Benefit

PMS

Real-time data capture at the point of care

Ability to generate local reports for service management and improvement

Link to PAS data to pull through demographics

Ability to generate GP letters at point of care

Ability to generate summary documents for patients and GPs at point

of care

Y Y

Searchable lists of patients by drug categories

Participation in Registry enabling benchmarking of service performance

& activity against national levels

Y Y

Webtool

Dataset:
The data fields were selected with the objective of providing participants
with benchmarked data to support service development, including
defining the local patient population, rates of surgery, use of medications
etc.
The data fields fall into 3 categories
l Mandatory all patients including demographics and diagnosis
l Required Mandatory if a defined event occurs (e.g. admission or
surgery)
l Optional desirable but not mandatory

Table 2: Mandatory dataset

IBD patient identifier
and demographics
(date of death)

Date and reason for

admission
Date of discharge
(if known)

The Registry has been set up to encourage universal participation so, in

addition to the PMS a web tool has been developed, and users of third
party systems can also submit data using the Registry Data Submission
Framework.

T
N
IE

Demographic and clinical data and NHS national statistics.

(an N3-approved company)

Anonymised
data file from
HSCIC

G
N

RESEARCH

Table 1:comparison between IBD Registry PMS and IBD Registry Webtool

Overview of registry data-flow & pseudonymisation in England

E P

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ND BE CHMA
N

The introduction of such systems in daily clinical care is recognized

as having great value in principle and is long overdue, but requires
adaptation of current clinical practice and is a change to IBD services as
significant as the introduction of IBD specialist nurses.

How is patient data fed into the Registry?

TIONAL

Medication: drug
type and date
started

Current diagnosis

Patient consent
to sending data to
Registry*

Disease classification
and smoking status

Date and type of

surgery

Date of diagnosis
of cancer and
cancer site

Height and weight

measurements
(children)

Medication: dose,
date started and
stopped
(optional)

Days lost from

school and work,
employment status
(optional)

IBD Control PROM

(optional)

Onset of symptoms
and initial diagnosis
(if known)

One of the reasons for sending patient identifiable data rather than
anonymised data into the Registry is that it enables the Registry to
access nationally-collected HES data for these patients. This means
that the relationships between demographics, clinical decisions and the
patients use of NHS healthcare services can be accurately established.

Progress towards a UK-wide system

The Registry process has been established for England and data
(captured using two different systems) on 5,468 patients has flowed
from six hospitals through the HSCIC for pseudonymisation and is
now being analysed for the Registry by the University of Liverpool.
HES data on these patients will be extracted by HSCIC in July 2015.
Routine quarterly submissions will take place from the end of July 2015
onwards. Similar arrangements are being negotiated in Scotland, Wales
and Northern Ireland and are expected to be completed by the end of
2015.

Future work

1
2
3

A key focus is engaging more IBD Teams to implement one of the

systems for capturing clinical information on their patients and using
this in their day-to-day management.
Case studies will be written to demonstrate the impact of using
data to improve patient care, drive service improvement and deliver
research in individual sites.
Use of the data collection tools for specific research projects.
An example of this is the anaemia evaluation project, which
measures the care and treatment of IBD patients who also have iron
deficiency anaemia.
Developing further tools and reports to maximise the benefit to
local services of participating in the Registry. This includes analysis
of HES data.

*required from May 2016

Affiliations: a University of Southampton; b University College London Hospitals c IBD Registry Board Executive References: 1 Rubin GP, Hungin AP, Kelly PJ, Ling J; Inflammatory Bowel Disease: epidemiology and management in an English general practice population. Aliment. Pharmacol. Ther. 2000; 14:1553-1559 2 Busch K, Da Silva SA, Holton M, Rabacow FM, Khalili H, Ludvigsson J;
Sick leave and disability pension in inflammatory bowel disease: A systematic review. 3 IBD Standards 2013

www.ibdregistry.org.uk