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IBD REGISTRY
REGIONAL WORKSHOP
WARRINGTON
MONDAY 7TH DECEMBER 2015

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Meeting Chair
Dr Keith Bodger
Consultant Gastroenterologist & Senior Lecturer in
Medicine, Aintree University Hospital

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Meeting objectives
To provide clarity on the national plans for ongoing data
collection for quality improvement in IBD
To review the local benefits of IBD Registry participation
for clinical teams
To support the development of local action plans

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These exciting developments come at a

time when many changes in therapy
are happening, and gives the UK the
ability to measure how this impacts on
real-life treatment for our patients, and
drive forward meaningful improvement
in patient care.
Dr Barney Hawthorne, IBD Section Chair

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Agenda
The changing IBD landscape including the future of IBD Audit and
Quality Improvement
Dr Fraser Cummings, Consultant Gastroenterologist, University Hospital, Southampton

Implications and benefits of the IBD Registry what recent data can
tell us
Dr Keith Bodger, Consultant Gastroenterologist & Senior Lecturer in Medicine, Aintree
University Hospital

Local priorities and facilitating Registry participation

Group work facilitated by Dovetail

Tea break

Supporting a local action plan

Group work facilitated by Dovetail

Feedback, discussion and action

Dr Keith Bodger

6.00pm Close of meeting

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 IBD Registry. All rights reserved

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The Changing IBD Landscape

Dr Fraser Cummings
Consultant Gastroenterologist
University Hospital, Southampton

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Inammatory Bowel Disease (IBD)

programme
UK IBD Audit

Introduc9on to the IBD programme

2006-2016
The rst truly na.onal audit performed within
Gastroenterology
Aims:
1.To assess the quality of care provided to people
with IBD
2.IdenDfy prioriDes for improvement

Elements of work: IBD programme

Round 1 Round 2 Round 3
06-08
08-10
10-12

Round 4 Round 5
12-14
14-16

OrganisaDon of services

InpaDent care

Paediatric paDents included

Primary care perspecDve of
IBD

InpaDent experience

Biological therapies

Focus on quality
improvement

Evidence of change: IBD programme

Round 1
06-08

Round 3
10-12

UC mortality rates have halved over 3 rounds of audit

1.7%

0.8%

Signicantly fewer readmissions for UC over 3 rounds of audit

51.1%

33.6%

Sites with at least some IBD nurse specialist provision

56%

78%

Sites with a designated Gastroenterology ward on site

67%

93%

PaDents entering remission (at rst follow up aUer 12 weeks)

62%

73%

Number of adverse events reported by paDents (at any follow

up treatment)

6%

5%

Inpa9ent care audit

Organisa9onal audit

Biological therapies audit

All reports, slide sets, action plans etc can be

downloaded from www.rcplondon.ac.uk/ibd

Total inpaDents audited = 23,762

Where next for the IBD

programme?
NHS England has moved focused to other areas
IBD programme entering a step down process from
the naDonal clinical audit programme
2016-2017
Aim to conDnue to deliver quality improvement to the
IBD community through integraDon with an IBD
Registry

The future.
vision for IBD audit and quality improvement
Data currently captured for Biological Therapies audit
on the Royal College of Physicians web tool.
Sites will be asked to TRANSFER to entering data via
the IBD Registry (Webtool/PMS) (dates tbc).
From data captured on IBD Registry Web tool IBD
audit programme will help hospital teams to make
improvements in paDent care.

IBD Registry: helping IBD teams to

make improvements in care.
How?
Quality improvement ini9a9ves including
Training: workshops, case series
Instant feedback on data entered data visualisa9on

Hospital team enters data: instant

provision of performance against
na9onal benchmarks

In the mean9me..
For the IBD audit please keep
entering your biological therapies
audit data. www.rcplondon.ac.uk/ibd
Next phase of data capture ends
29th Feb 2016.
Look out for informaDon in Spring on
next steps

Where next for the IBD

programme?
IBD Audit and the IBD Registry are currently working
together to plan a long term strategy to embed the
delivery of audit and quality improvement into the IBD
Registry.

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JOINING THE IBD REGISTRY

HOSPITAL MAKES INITIAL
ENQUIRY TO REGISTRY

REGISTRY SENDS
"INFORMATION PACK"

HOSPITAL COMPLETES &

RETURNS REGISTRATION
FORM

SYSTEM
IMPLEMENTATION

REGISTRY SENDS
RELEVANT GETTING
STARTED PACK"

HOSPITAL:
ORDERS PMS
REGISTERS FOR WEB
TOOL
CHOOSES OTHER OPTION

ESTABLISH PATIENT
CONSENT PROCESS

CALDICOTT GUARDIAN
APPROVAL

DATA SUBMISSION
TO HSCIC

Choose your EPR

IBD Patient Management System
Interfaces with hospital systems (PAS, document store, could
include pathology, prescribing etc)
Registry extract built in
Installation and licensing costs

Registry Web Tool

Same data structure as PMS + Registry extract
Does not interface with hospital systems (eg. PAS)
At present, free to use and minimal local IT

Other systems (Emis, Rotherham/Ferring) extract process

either built in or the Registry file templates can be used to
create one.
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Data entry strategies

Enter a few patients in clinic each week
Choose a sub-set of patients:
biologics?
new patients only?

Admin backfill ahead of clinics

Denominator population demographics
and diagnosis
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Registry PMS local benefits

Better access to clinical data for managing patients
Patient summary
Longitudinal data

PMS supports:

Point of care data entry

flow of clinical contact
monitoring of blood tests and investigations
multi-disciplinary team working
IBD helpline calls

Patient summary can be printed at end of consultation

GP letters part template data, part free text
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Web Tool local benefits

Data can be entered in the course of clinical contact
Better access to clinical data for managing patients
Web Tool supports:
flow of clinical contact
recording of any patient contacts
monitoring blood tests, cancer surveillance etc

Can print summary for patient and for hospital notes

at end of consultation
GP letters fixed template exported as pdf
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IBD Registry and IBD Audit

Any future funding from HQIP will be to embed
quality improvement processes and support into
the Registry
Data collection will transfer to the Registry
The RCP IBD Programme team and Registry will
agree the focus of future audit topics.
Registry datasets will be adapted as required.
The Registry Web Tool will enable all sites in the
UK to take part.
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If you wish to take part:

Contact Simone Cort at the BSG
scort@bsg.org.uk

www.ibdregistry.org.uk
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The Web Tool Early Experience

Maximising the Value of Registry
Data

Keith Bodger
Aintree University Hospital

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 IBD Registry. All rights reserved

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 IBD Registry. All rights reserved

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 IBD Registry. All rights reserved

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 IBD Registry. All rights reserved

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 IBD Registry. All rights reserved

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 IBD Registry. All rights reserved

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Web Tool Local Benefits

Data can be entered in the course of a clinical
contact, or as a back room administrative process
Better access to clinical data for managing patients
- point-of-care decisions (individual)
- service administration (monitoring, audit, research)
Can print a summary for patient and for hospital
notes at end of consultation
GP letter fixed template exported as pdf

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Data Entry Strategies

Enter a few patients in clinic each week
Choose a sub-set of patients:
Biologics? [Linked to UK IBD Audit?]
New patients? [Future audit topic?]

Admin. to backfill data ahead of clinics

Denominator population demographics
and diagnosis (minimum dataset)
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Linkages to Routine NHS Data

HES

OPD

A&E

Inpatient and
Daycase
Coding

Outpatient
Activity
Dataset

A&E
Attendance
Dataset

Registry
Minimum
Registry
Dataset

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The minimum dataset

Hospital Episode Statistics

q Current diagnosis (UC, CD or IBD-U)

q Date of diagnosis
q Consent status (from May 2016)

q Inpatient & Daycase Episodes

q Outpatient attendance
q Accident & Emergency attendance

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Linkages to Routine NHS Data

ElecDve daycase

Emergency

ElecDve
1365

Trust A

338

RRV

Trust BRNJ

151
919
324
83
1298

Trust C

RHM

Trust D

428
115
1190

RF4

Trust E

661
98

EMERGENCY
ADMISSIONS
WITH
MAJOR
SURGERY
8%

552

RC9

308
54

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EMERGENCY
ADMISSIONS
WITH NO
MAJOR
SURGERY
92%

Linkages to Routine NHS Data

Coding-based versus Registered local populations

IBD-specific activity reports for your unit
Opportunity to shape the content of local reports
Simple metrics using routine data driven by the needs of
the front line

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Local priorities and

facilitating IBD Registry
participation
Caroline Lindholm & Claire Munro
Dovetail

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1.

What is your Vision for your IBD

service over the next three years?

Each person write on one Post-It note

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2.

The main difference being part of

the IBD Registry could make to
my
IBD service is
Each person write just one difference on one Post-It note

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3.

What are the perceived barriers to:

- IBD Registry participation
- Successful transition?

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IBD REGISTRY
REGIONAL WORKSHOP
tea break

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Supporting a local action plan

Caroline Lindholm, Fraser Cummings &
Claire Munro
Dovetail

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Benefits of participating in the IBDR Registry

Helps you provide better care for your patients
Helps you comply with IBD Standards
Benchmarking of service performance and activity
against national levels can drive quality and outcomes,
making it easier to monitor and improve quality
Data will improve understanding of local outcomes
The IBD Registry can provide opportunities to participate
in IBR research

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Benefits of the IBDR Registry PMS

Real-time data capture
Clinical summary provides all key characteristics of
patients disease:
Saving time looking through notes
Reducing potential for error

Potential for greater efficiency in clinics

Improved safety through biologics monitoring
Access to better information to facilitate the efficiency of
the MDT

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Benefits of the IBDR Registry PMS

Supports best practice, person-centred clinical care
which can leads to higher quality clinical care
Provides access to an overview of your patients
Easy way to capture and demonstrate the impact that
your IBD service makes on patient care and outcomes
Safe delivery and monitoring of high-risk treatments
Improved data quality facilitates risk management and
avoidance

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Benefits of the IBDR Registry PMS

Better continuity of care, leading to increased patient
confidence in IBD service
Better access to information supports self-management,
leading to improved symptom control
Supports phone and virtual clinics, meaning shorter
waiting times for patients
Provides better information: printable summary of the
consultation and care plan

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Benefits of the IBDR Registry Webtool

Real-time data capture
Improved safety through monitoring of blood tests, etc.
Easy way to capture and demonstrate the impact that your
IBD service makes on patient care and outcomes
Provides a printable summary for patients and for notes
Has a GP letters facility saving valulable admin time
Better continuity of care, leading to increased patient
confidence in IBD service
Provides better information for patients: printable summary of
the consultation and care plan
Safe delivery and monitoring of high-risk treatments
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ACTION PLAN
What do I need to do
Before Christmas
By 1st March

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Feedback and discussion

Dr Keith Bodger

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IBD Regional workshops also being held at:

LONDON Friday 15th January
Chair: Dr Stuart Bloom

CARDIFF Thursday 21st January

Chair: Dr Barney Hawthorne

TAUNTON Friday 22nd January

Chair: Dr Ian Shaw

DARLINGTON Tuesday 26th January

Chair: Dr John Mansfield

BIRMINGHAM Friday 5th February

Chair: Prof Tariq Iqbal

GLASGOW Spring 2016

Chair: Dr Ian Arnott
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Your engagement and

participation are needed right
now to ensure that the benefits
of the Registry are fully
realised.
Dr Ian Forgacs
President, BSG

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Special thanks to
Janssen, Shire,Takeda and Tillotts

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www.ibdregistry.org.uk

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