IBD in the UK

improving patient outcomes and

experience
Co-Chairs:

Ian Arnott
Consultant Gastroenterologist, Edinburgh &
Clinical Lead, IBD Audit

Stuart Bloom
Consultant Gastroenterologist, London &
Chair, IBD Registry

Timing

Title

Speaker(s)

11.00

Welcome & introduction

Co chairs: Ian Arnott & Stuart

Bloom

11.05

A vision for IBD

David Barker

11.15

How clinical information can improve future IBD care

and outcomes

Fraser Cummings & Omar Faiz

11.40

Designing patient-centred services

Helen Terry

11.50

IBD patient portals the way forward?

Chris Calvert & Cath Stansfield

12.10

IBD research

Keith Bodger

12.25

Panel discussion moderated by Jonathan Freedland

Panel: Ian Arnott

Cathryn Edwards
Rozlynn Prescott
Richard Russell
Jeremy Taylor

13.00

Close

#ibdintheuk

How much do you feel IBD patient

outcomes and experience have
improved in the last 5 years?
Significantly
Moderately
Only a little
Remained about the same
Deteriorated

A Vision for IBD

Achieving Excellence
David Barker
Chief Executive, Crohns and Colitis UK
Chair, IBD Standards Group

What we want. . .
A world class level of care and
treatment for anyone with IBD
wherever they live in the UK

A level of service we would want for our own loved

ones (sons, daughters, mothers, fathers etc)

Defining excellence
The definition of quality in health care,
enshrined in law, includes three key aspects: patient safety
clinical effectiveness
patient experience
A high quality health service
exhibits all three
NHS Five Year Forward View Oct 2014

Defining excellence

t
s
i
l
a
i
c
e
Sp
s
e
s
nur

Access to
treatments

Access
to
services
n
o
i
t
p
i
r
c
Pres
s
e
g
r
a
h
c
. . .plus many others

Defining excellence

Defining excellence

Poll
Which of the following have made the
biggest difference in driving excellence
in care?
1. Introduction of the IBD Standards
2. IBD Audit
3. Developing our own quality improvement
programme locally
4. Involving patients in the development of services
5. IBD nurses
6. Better use of technology to collect and assess
clinical data and patient outcomes

Poll
If you could only use one tool to
measure/ benchmark excellence in
your IBD Service, what would it be?
1.
2.
3.
4.

IBD Audit
IBD Standards
NICE Quality Standard
Regular collection and assessment of clinical
data and patient outcomes/satisfaction
5. None of the above

Creating excellence

+
Clinicians

=
Patients

Poll
Making the UK IBD
Standards a reality in all
IBD Services across the
UK will require:

More consultants
More specialist nurses
Accreditation of IBD services
A redesign of your local IBD
service
A miracle

Thank You

It takes time to
create excellence.
If it could be done
quickly more
people would do it
John Wooden
Basketball coach

IBD in the UK
improving patient outcomes and
experience

How Clinical Information Can

Improve Future IBD Care and
Outcomes
Dr Fraser Cummings
Clinical Lead UK IBD Registry
Consultant Gastroenterologist University
Hospital Southampton NHS FT
IBD Registry. All rights reserved

ibdregistry.org.uk

Questions
Do you have a means of data capture which allows
you to easily obtain your colonoscopy caecal
intubation rate?

Yes/No

Do you have a means of data capture which allows

you to easily obtain your mean comfort score for
colonoscopy?

Yes/No

Are your endoscopy GRS outcomes part of your

annual appraisal documentation?

Yes/No

IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

Questions
Do you have a system for identifying patients who
have been on steroids for >3 months?

Yes/No

Do you have a robust system for Immunomodulator

monitoring?

Yes/No

Do you have a system for initiating and monitoring

patients on biologics?

Yes/No

IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

Point of care data entry systems

CIMS Patient Management System
IBD Registry Web Tool
Ascribe/Emis gastroenterology system

IBD Registry. All rights reserved

ibdregistry.org.uk

IBD PMS Functions

Patient Summary
MDT
Flareline
Nursing support
Drugs
Biologics
IMM monitoring
Steroids
5-ASA

IBD Registry. All rights reserved

Cancer Surveillance
system
Bones
Letters
GP
Patient Summary,
information etc.
Virtual clinics

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk

IBD Anaemia Project

Determine level of service and treatment IBD patients
receive with respect to iron deficiency
Outputs
Prevalence of iron deficiency

Total iron deficit

Treatment in an IBD outpatient population
5 centres, 10 consecutive UC and 10 CD patients each

IBD Registry. All rights reserved

ibdregistry.org.uk

Conclusions
How do you use data?
Can you use it more effectively to improve:
Patient outcomes?
Quality of patient care?
Service development?
Research?

What are the barriers to this?

www.ibdregistry.org.uk
IBD Registry. All rights reserved

ibdregistry.org.uk

IBD in the UK
improving patient outcomes and
experience

Mr Omar Faiz

Consultant Colorectal Surgeon & Senior Lecturer

St Marks Hospital & Imperial College, London
Chair of ACPGBI Ileal Pouch Registry
49

50

51

The origins of outcomes

measurement

William Farr

Florence Nightingale

....we do not want impressions, we want facts

The era of public reporting

State of New York
adult cardiac bypass
surgery
-A 40% reduction in risk
adjusted mortality was
observed within 4 years
following public
reporting

Data reporting is dynamic

When performance is measured,
performance improves. When
performance is measured and reported,
the rate of performance accelerates.
Thomas S Monson

54

55

OPTION 1 CENTRALISATION OF
CARE
The volume outcome effect in surgery

Less effect

Large effect

Colon
Kidney
Stomach

Oesophagus
Pancreas
Lung

56

Volume analysis of outcome following

restorative proctocolectomy.
British Journal of Surgery 2010
E Burns, A Bottle, P Aylin, S Clark, P Tekkis, A Darzi, RJ Nicholls, O Faiz

Long term outcome in

England

N=5,771 pouch
procedures

Burns E, et al. Br J Surg 2011

Is it really all about volume?

OPTION 2 QUALITY
IMPROVEMENT

Dr Atul Gawande MD
60

61

62

OPTION 3. REPORTING
OUTCOME
CONCERNS
-Only elective
-Only
perioperative
-May reflect
hospitals
- Better than
surgeon
-Doesnt account
for case-mix

90-day elective mortality

63

Bruce Keogh
Medical Director of the National Health Service in England

"After all, in my view, if you

can't describe what you're
doing and define how well
you're doing it, you have no
right to be doing it at all

Aim of the Pouch Registry

To improve standards in ileal pouch surgery
through a process of continuous national audit
of activity and outcome in an observational
registry

Pouch activity

185 surgical teams

99 hospitals logged on the system
2383 cases submitted to the database (dating to

1977)

Since re-launching 90 and 100 RPCs submitted in

2010 & 2011 (HES data 361 and 327).

Now reached 3,000 cases!!!

Primary pouch surgery diagnosis

Outcome pouch failure

69

70

71

Summary

- IBD Registry data

- HES data
- Pouch Registry

IBD Standards

IBD Audit & QIP

Thank you

Ive upped my game. Now up yours!

Pat Paulsen american satirist 1927-1997
73

74

IBD in the UK
improving patient outcomes and
experience

Feedback, consultation or co-design. At

what point is it most useful to engage
with patients to re-design services to
better meet their needs?
Right from the start
When you have formulated some ideas to
explore with them
When seeking their views on your proposals
By asking for feedback on their experiences
of existing services.

Designing Patient-centred
Services
Feedback, consultation or co-design. At
what point is it most useful to engage with
patients to re-design services to better
meet their needs?
1. Right from the start
2. When you have formulated some ideas to
explore with them
3. When seeking their views on your proposals
4. By asking for feedback on their experiences of
existing services.

Co-design
a process where professionals empower, encourage, and
guide users to develop solutions for themselves.
co-design encourages the blurring of the role between user
(patients) and professionals, and enables services and/or
care pathways to be developed together, in partnership
by encouraging the trained designer (professionals) and the
user (patients) to create solutions together, the final result
will be more appropriate and acceptable to the user
the quality of design increases if the stakeholders' interests
are considered in the design process.

co-design differs from participatory design in that it does

not assume that any stakeholder a priori is more important
than any other.

Better care for a better life

with IBD
A programme for
improving the quality
of care by codesigning and
implementing new
approaches to the
management of IBD
in Scotland

 Multi-stakeholder collaboration, led by

Crohns and Colitis UK, to co-ordinate IBD
Quality Improvement across Scotland
Ensuring alignment with Scottish
Government priorities
Taking the best good local initiatives in
IBD and disseminating them across
Scotland
Promoting collaboration and engagement
with IBD Research across Scotland

Pan Scotland IBD Care

Delivery Plan
Better Out Comes for
Patients

Pan-Scotland
IBD Care
Delivery Plan
Framework

UK Standards for
Inflammatory Bowel
Disease

IT e Health
Strategy
Health
Economics
SIGN Guidance

National Multistakeholder Steering

Group

Audit

IT Task
Group

Pilot
outcomes
Pilot work
streams
Service
redesign
Co designed
service
mapping
Pilot Working
Groups

Partners
e.g. TOC

IBD
Nurses

Health Board Pilot Structure

Local Patient
Rep
Clinicians
Pilot Working
Group

Nurse
GP
Dietician
Steering
Group Rep

Health Board

Smart phone applications

Arena meeting, London 2014

Mapping the patient journey

NHS Highland Patient Mapping

Patient Survey
http://www.crohnsandcolitis.org.uk/whats-new/scottish-ibd-patients-survey-results

NHS Highland IBD pilot

Draft work plan produced July 14, revised 11/3/15.

Work stream

One

Early diagnosis Faecal calprotectin

Description

Faecal
calprotectin is a
stool biomarker
for gut
inflammation.
FC could be
used to
differentiate IBS
from IBD
patients.
IBS patients
could then be
referred directly
to dietetics.

Outcomes

Measurement

1.

Primary care
uptake
IBS dietetic
referral
STT
endoscopy use
GI OPD use

2.
Colonoscopies
if GP did FC
% Referral GI
NSTT
Cost incurred
for FC
3.
Cost incurred
for IBS dietician
4.
5.
6.

All patients
presenting in
clinic with [X
]number of
IBD
symptoms to
have stool
specimen
sent for
Faecal
calprotectin
No. of times
advise
provided to
GPs to carry
out FC and
identify the
result
No. of
referrals to
IBS
No. of STT
Reduction in
OP clinic
attendance
Cost of
service

Lead

Milestone

Jobs/Notes

1. Literatur
e Search

Communi
ty FC
2. NHS
Highland
Lab FC
3. ??? Point
of Care
Testing
for GPs
4. Protocol
FCResultsGPS
5. Educatio
n GP
Surgeries

Two

Fast track referral

and rapid access
IBD services.

Three

IBD MDT

Four

Ascertaining our
population

There is a need
for clear referral
processes for
both new and
return IBD
patients, 24/7.
These include
dedicated
telephone and
email
communications
& rapid
access/One Stop
clinics

All patients should be

discussed at an IBD
MDT. New diagnoses,
escalation of
treatment, surgery
decisions, introduction
and stopping of
biologic drugs

We are uncertain
about the total
number of IBD
patients under our
care in NHS Highland
(and the Western
Isles). Without this
information, it is
impossible to plan
services. We need to

in OOH referrals
time for first referral
from GP to clinic
time to diagnosis
staff costs e.g.
IBD Nurses
Gastro
MDT routinely
operational
Care Navigator role in
place
Clinics (?
Consultations)

1.

No. of OOH

referrals
Measure time
to diagnosisreduce by how
much? ( this
can start of as
a fixed number
of weeks.
Consider how
these would be
counted i.e.
from symptom
presentation to
referral etc)
Costs
No. of MDT
mtgs
No. of
consultations

1.
better monitoring of
patients
2.
Shared decision
making/discussion
Holistic care
Biologics withdrawal
plan
Setting Up Costs

No of biologic

withdrawals
Patient opinion
on holistic care
better

Accurate
demographics of NHS
Highland patient
population

Information

available on
no. of patients
with IBD in
NHS H
currently being
treated
As above on
drug regime

2.

3.
4.
5.

1.

2.

1.

2.

3.

4.

1.
2.
3.

Stock take
what
happens
now
Prioritise
realistic
goalshierarchy
What is
needed to
implement
new
service ?
Start MDT

Scope
necessary
resources
Availability
clinicians
Implementat
ion

1.

Options
appraisal
2.
Costs
3.
Cloud
finance
through
local
Chapters for
ALBA Soft
National Registry
PICTS
ALBA Soft (GP
Data Mining)

Five

Maintaining care.

Six

Dietetic service
provision

Seven

Guided self
management and
peer support

Multiple agencies can

look after patients with
long term conditions. It
is desirable that IBD
care is not wholly
looked after by
specialist doctors.
Some patients would
like the opportunity to
use guided self
management.
Work needs to be
performed to
understand which
patients are suitable
for which service and
to describe that
service.

Dietetics has a huge

role in the
management of GI
disease and in
particular IBS/IBD. We
need to work on the
availability of dietetic
service and on
protocols for access
throughout a patients
journey

Many patients express

the desire to be able to
look after their own
condition safely and
with support, when
needed. This requires a
dedicated pathway and
protocols to enable this
to happen efficiently.
-Allow patients to be
supported if they wish
to take up self

GP-shared care
arrangements
Non traditional
clinics
with video and
tele clinics
( Guided self
management)
routine, scheduled
OPD
clinic appointments
Joint
medical/surgical/
dietetics/psych
clinics
transitional care
clinics
for juvenile onset
IBD
Link Nurses ?
Liaison Services ?

1.

[Cost of
implementation]

[LPLM]

proportion of
patients
in our NHSH
population
being supported to
take
up self
management.
routine primary and
secondary care
clinic
appointments

[ES/SS]

1.

2.

3.
4.
5.
6.

No. of:

a.
vc
b.
telephon
e
c.
outpatie
nt clinics
Direct and
indirect
costs/benefits
of above
No. joint clinics
held
Direct and
indirect costs of
3
No. of
transitional
care clinics
Direct and
indirect for 5.

1.
2.

Protocol
Development
Education

2.

3.
4.
5.

Patient
Education
Design
dedicated
protocol/path
way to
enable
Refer to
recommenda
tions [?]
Whats
Available
PICTS/Smart

Where are we now?

The report of Phase Two of the project...
The information technology
infrastructure and software
development related to IBD care has
been identified as a significant aspect
of the project and any proposed pan
Scotland Delivery plan.

IBD Smart phone App

Angus J M Watson
Professor of Colorectal
Surgery
NHS Highland

More mobile phones than toilets

Smart Phones & IBD

Geographically
dispersed population
40% Scotlands land
mass
330K population
~600 IBD patients
Remote & Rural
hospitals
Raigmore, Inverness

Daily data
Data based on
Harvey Bradshaw
Simple Clinical Colitic Index

Mobile phone wiped of data

Data remains anonymised until it
crosses NHS firewall
Patients can message though the app

Focus groups
Patients
Enthusiasm &
support
Transform clinical
encounters
Reassured by being
monitored
Increased contact
availability
Potential of new
technologies

Staff
Patient reported
data valuable
Integration of app
into healthcare
delivery good
app easy to use
See the potential

Next steps for the App

Link to Scottish EPR
Integration with IBD
registry
Data flow to ISD and HES
Link with IBD portal?
A hybrid system?

Region wide adoption

Online peer support group

Scottish IBD Project Outcomes DRAFT

IBD Standard

Outcomes

Deliverables

Project Activity

Better service organisation

and improved quality of
clinical care and patient
experience for both acute
treatment and ongoing
support needs as a long-term
condition.

Standard A
High Quality Clinical
Care

Safe Care

Maternity, mental health and primary care

components of the Scottish Patient Safety
Programme implemented with
measureable improvements

High Quality Clinical

Care

Unscheduled and Emergency

Care

1.
2.

Out of hospital care action plan

Increase flow through the system

High Quality Clinical

Care

Care for Multiple and Chronic

Illnesses

1.

Key pressure points in the entire patient

pathway for most common multiple
illnesses will be identified and actions
agreed

High Quality Clinical

Care

Prevention

Early detection of cancer

Measurements
1.

All patients surveyed will report

patient experience ratings as
good or very good by May 2016

Developing models for

psychological intervention

1.

Improvement of patient pathway

reducing pressure on A&E
departments service redesign

No of patients attending A&E reduced

in Pilot trials by [x]
No of patients seen using vc
appointments increased by [x%] in
Pilot trials

Introducing new approaches to IBD

Care focused on enabling all IBD
patients to live the best possible
life with their condition.

1.

To increase the proportion of people

diagnosed and treated in the first
stage of [breast], colorectal [and
lung cancer] by 25%, by 2014/15

Standard B
Local Delivery of Care

Primary Care

2020 Vision for expanded primary care

New models of place-based primary care

Increasing the role of Primary CareGP engagement

1.

GP active member of project

Pilot and Working Group,
including IT Task group

Local Delivery of Care

Integrated Care

1.

Public sector reform third sector

and NHS partnership

1.

[1]

[2]

Preparatory work with NHS Boards, local

authorities, third and independent
sector and the building of effective
Integrated Health and Social Care
Partnerships

Crohns and Colitis UK Proposal to The Quality Unit, DG Health and Social Care (February 2013)
2020 Vision

UK-Wide ambitions
Capturing lessons
learned in Scotland
Adapting these to
address UK-wide
issues
Exemplar for other
long-term
conditions

Thank you!

Elaine Steven
Peter Canham
Shona Sinclair
Andrew Greaves
Angus Watson
Cath Stansfield
Pilot Working Groups
National Steering Group
Strategic Planning and Clinical Priorities
Team Scottish Government

IBD in the UK
improving patient outcomes and
experience

IBD Patient Portals

- The Way Forward?

Dr Chris Calvert
Royal Devon and Exeter NHS
Foundation Trust
110

Digital Technologies

Technology fully integrated

Will change the way healthcare is delivered
Painfully slow adoption in the NHS

Internet Use 2014

84% households have Internet
access
74% use online services
15% patients aged between 55-65
make health appointments
68% used mobile devices

ONS Internet Access Households and Individuals 2014

IBD Portal
Provide patients 24 hr secure access
to their IBD record
Bloods
Clinic letters
Disease monitoring tools
Secure email
Trusted health information

IBD Portal

Secure
Easy & appealing to use
Accurate education material
Integrated easily into routine practice

Barriers

Potential Benefits
Improve communication
Enhance patient empowerment
Improving capacity to take control of
their IBD
Improve knowledge
Promote shared decision making

Enhance safety

Timeline of Development
Apr 2012
Apr 2013
and
May 2013
Aug 2013
Nov-Apr 2014

Project commenced
Design, implementation
testing
Recruitment commenced
Recruitment stopped
Evaluation

Results

75% IBD patients approached registered

183 patients recruited
Logins mean 11.2, median 3
Average duration of each visit over 5
min
25% 0-1 times, 25% > 10 times over
6/12
High levels of user satisfaction

Results
90% perceived supported
management
32% helped with decision-making
29% shared access with family/friend
Use associated with disease activity
Increase access to IBD helpline from
users

5 Year Forward NHS Plan

Greater involvement of patients and selfsupported care
Empower patients to take greater control
Better ways of organising care
Break down artificial barriers between 1 and
2 care
Harness technology and improve access to
information
Every patient will have full access to EHR
Be able to write in them!

Conclusions
Embrace technology and look at new
ways of delivering care
Design and implementation within
the NHS is entirely feasible
Carefully consider barriers to
implementation
Do Patient Portals actually change
clinical outcomes?

Special Thanks
Crohns and Colitis UK
Renal Patient View
Prof. Turner & Dr Simpson
Renal Patient Association
Web developers Solid State Group

Salford Royal Hospital

IBD Nurses- Cath Stansfield, Grace Hammill &
Justine Newbery
Prof. McLaughlin, Dr Robinson, Dr Lal
IT Team Paul Creely & Usman Darsot
R&D Department

IBD in the UK
improving patient outcomes and
experience

Patient Portals The Way

Forward?
Cath Stansfield MSc, BSc, RN,
NP
Advanced Practitioner
Gastroenterology
Salford Royal Hospitals NHS Trust

Challenges to IBD services

IBD

managem
m
s
rk
ent
o
w

So

ho
e
m

h
e
ww

o
t
ave

r
e
t
ar

h
d
an

r!!
e
ar d

What do people want from the

NHS?
Accurate and reliable information
Improved access to information
More involvement in decisions about health
Better integration of care

Are portals the way

forward?

1. Electronic Health
Record

2. Personal Health
Record

3. Information System

Benefits to service
IBD Portal as a tool of self
management
Reduction in outpatient attendances

A 3rd Checker!
Tracking disease activity
Supporting biologic requests

Barriers to Implementation
Locally
Consultant time
My IT knowledge
IT department support

Portal project roll out

Clinicians concerns regarding sharing of
information
Local IT infrastructures

Patient Feedback
Somewhere to turn before Google
Better understanding of my disease - including
disease location and procedures
Greater understanding blood tests and results
Inter-transferable data from one medical
institution to another - I can just log in anywhere
I can document my medications and disease
pattern
Fantastic chronological database of treatments,
appointments and discussions with the care
team

Future Plans
Roll out the service to all patients at Salford
Royal to further evaluate its impact on
services
Implement the Portal into early adopting
hospitals
Evaluate the drivers and barriers to
implementation and develop a roadmap to
facilitate national roll out
Link the Portal with the National IBD
Registry

IBD in the UK
improving patient outcomes and
experience

IBD Research
Keith Bodger
University of Liverpool

Service
Deliver
y

RCTs, long regarded as the

gold standard have been
put on an undeserved
pedestal. Their appearance at
the top of hierarchies of
evidence is inappropriate.
They should be replaced by a
diversity of approaches that
involve analysing the totality of
the evidence-base

Observational studies are

also useful and, with care in
the interpretation of results,
can provide an important
source of evidence about
both the benefits and harms
of therapeutic interventions

Real world data

It is increasingly recognized
that conclusions drawn from
classical clinical trials are
not always a useful aid for
decision-making assessing the value of a
drug or technology requires
an understanding of its
impact on current
management in a practical,
real-life setting.

Randomized
Controlled Trials

Real world
Observational data

Cost inputs

Efficacy
Effectiveness of
standard care

PMS

Web Portal

Existing
Systems

Patient Management System

(InfoFlex)

Web-based Tool

Local Database (e.g. Ferring,

Ascribe)

Overview of Registry data-flow & pseudonymisation in England

Health and Social Care
Information Centre
(HSCIC)
Data Safe Haven

Pseudonymise
d data file
Receives and pseudonymises from HSCIC

IBD Registry web

servers
The Registry
Database

the data files from hospitals

for audit and research

Allocates Registry identifier

and
maintains data file
linking NHS
number and
Registry identifier

Web Tool
databases

Separate database for each

Trust/Board
Data files
Patient identifiable data
Extracts and forwards data
from
encrypted and accessed only
from
HES and ONS
hospitals
by hospital users who then
datasets
export their data to the
e.g. Death, cancer, hospital
Registry.
All export through secure networks to HSCIC.
Localetc.
Trusts/Boards
data
Legacy IBD
database
(on PC in
hospital)
iBD Registry, April 2015

Hospital or GI
Dept IBD
database
e.g. Ascribe,
Ferring, Hospital

IBD Registry
PMS using
InfoFlex
software

Data extract
files from
web tool
returned to
Trust server
before upload
to HSCIC.

N
3
Web
Tool
access

(Registry data
set, national

Minimum dataset

Current diagnosis (UC, CD or IBD-U)

Date of diagnosis
Date of symptom onset
Consent-related items
UC extent: Proctitis, distal, extensive
CD classify: Location and behaviour
Smoking status
Drugs
Admissions
Surgery

Minimum dataset

Current diagnosis (UC, CD or IBD-U)

Date of diagnosis
Date of symptom onset
Consent-related items
UC extent: Proctitis, distal, extensive
CD classify: Location and behaviour
Smoking status
Drugs
Admissions
Surgery

Hospital Episode Statistics

Inpatient & Daycase Episodes

Outpatient attendance
Accident & Emergency attendance

Minimum dataset

Current diagnosis (UC, CD or IBD-U)

Date of diagnosis
Date of symptom onset
Consent-related items
UC extent: Proctitis, distal, extensive
CD classify: Location and behaviour
Smoking status
Drugs
Admissions
Surgery

Hospital Episode Statistics

Inpatient & Daycase Episodes

Outpatient attendance
Accident & Emergency attendance

Demographics

Trust A
Trust B
Trust C
Trust D
Trust E
Trust F
Age

Contacts

Medication

Trust A

Trust B

Trust C

Trust D

Trust E

Inpatient Care

Selected
centres

Missing
cases

Missing data

Research Designs

A data Ark for the IBD

community?
An Ark is a secure data analytics facility that will bring
together the right mix of skilled people, with the data,
analytical methods and infrastructure and tools to
provide continuous improvement and innovation
Evidence produced by services can be rapidly analysed,
service improvements identified and then implemented,
and new evidence produced
The whole purpose of the Ark is to fundamentally change
the relationship between service and research and how
that linkage is thought of and what it is expected to be

Service
Deliver
y

Conclusions
The IBD Registry offers an opportunity to serve
as a powerful vehicle to support service delivery,
audit and research
A secure ARK to host data for real-world
studies
Platform for prospective research an off-theshelf solution
Data content, structure, capture, linkage and
supporting analytics will continue to evolve
Key to success? Stakeholder engagement and
incentives

IBD in the UK
improving patient outcomes and
experience

Panel discussion:
the IBD Vision
getting there from here
Moderator: Jonathan Freedland

 Jonathan Freeland
Executive Editor, The Guardian

Ian Arnott
Consultant Gastroenterologist, Edinburgh
& Clinical Lead, IBD Audit

David Barker
Chief Executive, Crohns & Colitis UK
& Chair, IBD Standards group

Cathryn Edwards
Consultant Gastroenterologist, Torbay Hospital, Devon
& Senior Secretary of BSG

Richard Russell
Paediatric Gastroenterologist, York Hill Hospital, Glasgow
& past-Chair, BSPGHAN

Jeremy Taylor
Chief Executive, National Voices

What will make the biggest difference to

improving patient care in the next 3
years?
More IBD nurses
The routine capture and use of clinical data
electronically
Greater political understanding and awareness
of IBD
Actual delivery of the IBD Standards in all
services across the UK
Research

IBD in the UK
improving patient outcomes and
experience

IBD Registry
Sites can register now to use the IBD
Registry web tool
Registration forms available from
Simone Cort today
simone.cort@ibdregistry.org.uk

Presentations
All presentations available now
& video footage soon at
www.ibdregistry.org.uk

David Barker
Chief Executive, Crohns and Colitis UK
Chair, IBD Standards Group

IBD in the UK
improving patient outcomes and
experience