IBDR Regional Workshop: London

IBD REGISTRY
REGIONAL WORKSHOP
LONDON
FRIDAY 15TH JANUARY 2016
This meetings series has been funded by Janssen, Shire Pharmaceuticals, Takeda Ltd UK and Tillotts UK Pharma.
Logistics support has also been provided by Tillotts. None of the companies had any influence over programme content.
IBD Registry. All rights reserved
ibdregistry.org.uk
Chair:
Dr Stuart Bloom
University College Hospitals
IBD Registry Chair
ibdregistry.org.uk
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 in the
context of the IBD Registry
ibdregistry.org.uk
Agenda
2.00pm
Welcome and introduc3on
Chair: Dr Stuart Bloom
2.15pm
The changing IBD landscape
Richard Driscoll
2.55pm
How being part of the IBD Registry might help

improve an IBD service
Sister Kay Greveson
3.15pm
How to join the Registry
Claire Munro
3.20pm
Workshop 1: Local priori3es and facilita3ng

Registry par3cipa3on
Facilitated by Claire Munro &

Nicola BreQ
4.10-4.30pm Tea break

4.30pm
Workshop 2: Solu3ons and ac3on plans
Facilitated by Claire Munro &

Nicola BreQ
5.15pm
Key message development
Claire Munro
5.30pm
Feedback
Dr Stuart Bloom
6pm
Mee2ng close
ibdregistry.org.uk
#ibdregistry
@BritSocGastro
#ibdaudit
@RCPLondon
@CrohnsColitisUK
@SBLOOM6
@dovetail_health
ibdregistry.org.uk
Thank you to our sponsors

This meeting series has been funded by:
- Janssen
- Shire Pharmaceuticals
- Takeda Ltd UK
- Tillotts UK Pharma.
Logistics support has also been provided by Tillotts
None of the companies had any influence over programme content.
ibdregistry.org.uk
Where are we in the Registry journey?

What Registry?!
Not sure which

data entry
op3on to go for
Trying to get the

PMS
Using the PMS

to enter data
rou3nely
Using the web

tool
Data on all my
3,000 pa3ents
entered
PMS ordered
but not installed
yet
PMS installed
but nobodys
using it
In the process of
geYng access to
the web tool
ibdregistry.org.uk
Teaser campaign
Examples of outputs and potential outputs
from the Registry
ibdregistry.org.uk
Pa#ents with Diagnosis

Living
Deceased
1600
1400
1200
1000
800
600
400
200
0
Crohn's Disease
Ulcera6ve Coli6s
ibdregistry.org.uk
All other diagnoses
IBD Unspecied
Treatment with single agent

AZA only
MER only
Oral MTx only
INF only
ADA only
300
250
200
150
100
50
0
Crohn's Disease
Ulcerative Colitis
All other diagnoses
ibdregistry.org.uk
IBD Unspecified
Combina(on Therapy
AZA and INF
AZA and ADA
Oral MTx and INF
Oral MTx and ADA
100
90
80
70
60
50
40
30
20
10
0
Crohn's Disease
Ulcera:ve Coli:s
ibdregistry.org.uk
All other diagnoses
IBD Unspecied
Symptom to diagnosis
ibdregistry.org.uk
ibdregistry.org.uk
6. GP letter & patient summary examples: MDT letter
Dr Walker
The Practice
New Road
Spinneyville
Woodshire
WS1 2SW
Extra GI manifestations:
Disease Complications:
Surgery
Out Patient Visit

Date of contact:
01/07/2013
Ulcerative Colitis
Diagnosis date:
01/12/2012
Ulcerative proctitis - Involvement limited to the rectum
8 - Patient is considered to be in remission if disease score is <=2 and severe
if disease score is >10.
Joints : Arthralgia; Eye : Uveitis
Rectal bleeding, anaemia
10/06/2013 Colectomy & ileostomy with retained rectal stump
Type of Contact:
Diagnosis:
Disease extent:
Modified UCDAI:
LE
Dear Dr Walker,
Re: Mr Tony TEST 10/11/1975 NHS No:454 454 4545 Hosp No: L1145800
7 Lime Walk, Treetown, Woodshire, WS1 1SW Tel: 01923 898989
Medication
STOPPED
Dose
Route
Frequency
Date Stop
Budesonide
100mg
Oral
Weekly
01/07/2013
NEW & CHANGED
Dose
Route
Frequency
Folic Acid
10mg
Oral
Once daily
ONGOING
Dose
Route
Frequency
Pentasa Sachet
2mg
Oral
Twice daily
ADVERSE REACTION
Side Effects
Budesonide
Psychosis
Disclaimer: non-IBD related medication being taken by the patient is not listed here.
Reason
Steroid induced
Date
01/07/2013
The following investigations have been ordered: X-Ray Abdomen, Colonoscopy

Blood tests requested: Routine bloods: FBC, U&E, LFTs, CRP, ESR, Bone, Ferritin, B12, Folate
Yours sincerely
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
ibdregistry.org.uk
ibdregistry.org.uk
The Changing IBD Landscape

Richard Driscoll
Development Lead
IBD Registry
ibdregistry.org.uk
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.Iden3fy priori3es 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
Organisa3on of services
Inpa3ent care
Paediatric pa3ents included

Primary care perspec3ve of
IBD
Inpa3ent 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%
Pa3ents entering remission (at rst follow up afer 12 weeks)
62%
73%
Number of adverse events reported by pa3ents (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 inpa3ents audited = 23,762
Where next for the IBD

programme?
NHS England has moved focus to other areas
IBD programme entering a step down process from
the na3onal clinical audit programme
2016-2017
Aim to con3nue to deliver quality improvement to the
IBD community through integra3on 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).
From data captured on IBD Registry Web tool IBD
audit programme will help hospital teams to make
improvements in pa3ent care.
IBD Registry: helping IBD teams to

make improvements in care.
How?
Quality improvement ini3a3ves including
Training: workshops, case series
Instant feedback on data entered data
visualisa3on
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
Monday 29th Feb 2016.
Look out for informa3on 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.
ibdregistry.org.uk
Data entry options
IBD Registry
UK IBD Registry
A Central Anonymised Dataset of IBD Patients
EXISTING IBD
SYSTEMS
IBD REGISTRY
PMS
Reports
l Outputs
l Analysis
l Feedback
l Data for Research
l Quality Measures
l Performance
l
DATA SAFE HAVEN
LEGACY DATA
MIGRATION
WEB TOOL
Data entry options
IBD Registry
UK IBD Registry
A Central Anonymised Dataset of IBD Patients
EXISTING IBD
SYSTEMS
IBD REGISTRY
PMS
Reports
l Outputs
l Analysis
l Feedback
l Data for Research
l Quality Measures
l Performance
l
LEGACY DATA
(discounted)
costs
MIGRATION
payable to supplier
e.g. Rotherham,
EMIS etc
DATA SAFE HAVEN
WEB TOOL
currently free of
charge
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 extract process built in (Eg. EMIS)

or use Registry file templates to create an export.
ibdregistry.org.uk
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
(Initial data import is possible, but depends on the format of
the original data.)
ibdregistry.org.uk
Registry PMS
Local benefits
Data can be entered in the course of clinical contact
Better access to clinical data for managing patients
growth charts can be viewed
PMS supports:
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
ibdregistry.org.uk
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
worklists for 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
ibdregistry.org.uk
Consent
From May 2016 all patients in the Registry will
need to be consented
There are four separate consent questions
Our experience so far suggests patients tend to
consent to all
ibdregistry.org.uk
Consent
1. Informed consent for Registry:
This allows personal demographic and clinical data to be sent to
the IBD Registry
If patients say NO to this then the subsequent questions are not
applicable.
2. Informed consent for linkage:

Allows HSCIC to use NHS numbers to extract and link to past
Hospital Episode Statistics and then repeat the extraction each
year as new HES data is published
Allows other linkages such as:
cross-border activity with Wales and Scotland
accessing the mortality register held by Office of National Statistics
potentially other national audits such as bowel cancer.
ibdregistry.org.uk
Consent
3. Informed consent for research
- Allows data to be used by researchers who have received Registry
approval to access the Registry data
4. Informed consent to be contacted for future research

studies
- Allows data to be matched against criteria for research projects
(e.g. a study into side effects from a particular type of treatment)
- If a patient seems eligible, HSCIC will contact their local clinical
team.
For more information on consent:

http://ibdregistry.org.uk/resources/consent-materials/
http://ibdregistry.org.uk/information-for-patients/
ibdregistry.org.uk
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.
ibdregistry.org.uk
Contact Simone Cort at the BSG

scort@bsg.org.uk
www.ibdregistry.org.uk
ibdregistry.org.uk
How being part of the IBD Registry

might help improve an IBD service
Sister Kay Greveson
IBD Nurse Specialist
Royal Free London Foundation NHS Trust
ibdregistry.org.uk
Why?
Facilitate audit/ research

Service improvement/ development
How many IBD patients in your service?
Duplication of info/ work
Easier access to patient info
ibdregistry.org.uk
ibdregistry.org.uk
Implementation process
Aug 2014: Funding & ini3al mee3ng with organising team & CIMS
Nov 14- Feb 2015 Deciding site-specic content requirements
IT team management (systems interface issues)
December 2015- Group training and go live! (Biologics 1st)
ibdregistry.org.uk
Reflections
Challenges?
Clinical engagement
Training
Cross-site
IT issues
Time
Data entry
ibdregistry.org.uk
Reflections
Learning points?
Team work
Engagement
Realistic goals
One size doesnt fit all
Implementation plan
Time and expectations
ibdregistry.org.uk
Benefits and outputs
Streamline patient records

Audit & research
Patient safety
Benchmark against standards
Integrated care
ibdregistry.org.uk
Patient Telephone Contact
ibdregistry.org.uk
Patient Outpatient Contact
ibdregistry.org.uk
Details of contact & GP letter

Outcome of contact (OPA/ admission/ advice)
Effective audit trail
Consistent information each visit
?Help with tariff charge
ibdregistry.org.uk
Disease Summary Screen
ibdregistry.org.uk
Summary of patient contacts
ibdregistry.org.uk
Summary of patient contacts
MDT
Outcomes
Outpa3ent/
Telephone contact
& outcomes
Biologics funding
outcomes
Inves3ga3ons
summary
Virtual biologics
outcomes
Day case
contacts
Hospital
admissions
Track PROMS/
disease ac3vity
trends
ibdregistry.org.uk
Immunisations & Screening
Patient safety
Incorporates routine screening
Easy to audit and benchmark
Fast entry and easy reporting
ibdregistry.org.uk
Immunity Check List
ibdregistry.org.uk
Biologics Audit
Data currently captured for Biologic audit on the RCP
web tool
Sites will be asked to TRANSFER to entering data via
the IBD Registry (Webtool/PMS)
Data captured on IBD Registry Web tool
Improvements in pa3ent care
Reduced workload
? Improved audit par3cipa3on
ibdregistry.org.uk
Audit & Research
ibdregistry.org.uk
Audit & Research
ibdregistry.org.uk
Audit & research
y
Onl
od
o
g
as
ta
a
d
he
t
s
a
ibdregistry.org.uk
!
d
e
r
nte
ibdregistry.org.uk
How to join the IBD Registry

Claire Munro
Communications Lead IBD Registry
ibdregistry.org.uk
STEPS TO JOINING THE IBD REGISTRY

SIMONE SENDS "INFORMATION
PACK [contains info on steps to joining]
INITIAL ENQUIRY TO
Business case
Informa3on for CaldicoQ Guardians on
par3cipa3ng in the IBDR and registering
with HSCIC
Sample screenshots, leQers & reports
Technical overview
Consent materials
REGISTRATION FORM TO COMPLETE &
RETURN
HOSPITAL
COMPLETES &
RETURNS
REGISTRATION
FORM
INTERNAL
APPROVALS, E.G.
CALDICOTT
GUARDIAN , IT ETC
REGISTRY SENDS RELEVANT

GETTING STARTED PACK"
SYSTEM (PMS/ WEB
TOOL)
IMPLEMENTATION
ESTABLISH PATIENT
CONSENT PROCESS
CALDICOTT
GUARDIAN APPROVAL
FOR DATA UPLOAD
TO HSCIC
PLAN TEAM
APPROACH TO
DATA COLLECTION
Welcome leQer
Contacts & support
Checklist
Mandatory data items
Quick start guide for PMS/ web tool
How to submit your data (including
registering with HSCIC)
ENTER DATA
SUBMIT DATA
TO HSCIC
HOSPITAL:
ORDERS PMS/
REGISTERS FOR WEB
TOOL/
CHOOSES OTHER
OPTION
ibdregistry.org.uk
Local priorities and

facilitating IBD Registry
participation
Nicola Brett & Claire Munro
Dovetail
ibdregistry.org.uk
1. Individually, on a post-it note,

write down your vision for your
IBD service over the next 3 years
WRITE BIG LIKE THIS

not small like this
ibdregistry.org.uk
2.Individually, on a post-it note, complete

this sentence:
The main difference being part

of the IBD Registry could
make to my service is
Each person write just one difference on one post-it
ibdregistry.org.uk
3.Whats my/ our next goal?

In clinical teams (if possible), agree
the next step, e.g. business case,
agree how to enter data etc
ibdregistry.org.uk
IBD REGISTRY
REGIONAL WORKSHOP
tea break
ibdregistry.org.uk
Supporting a local action plan

Dovetail
ibdregistry.org.uk
Supporting a local action plan

Dovetail
ibdregistry.org.uk
Local priorities & facilitating Registry participation
Where are
we going?
Your vision
Why?
How will
being part of
the Registry
help us
What?
Priori.es
and goals
ibdregistry.org.uk
Sor3ng out
the How?
Whats
stopping us
from
achieving
our goal?
Ac3on
planning
Prac.cal
solu.ons:
short and
long-term
ac.ons
1. In groups, list on a flip chart all

the BARRIERS to achieving your
goal
ibdregistry.org.uk
2. In groups, brainstorm
SOLUTIONS and list them on the
flip chart
ibdregistry.org.uk
3. In groups, write an action plan with a

short and medium term action for
each barrier and solution:
What will you do?
Who will do it?
By when?
What resources are needed?
ibdregistry.org.uk
Key messages help!

Claire Munro
ibdregistry.org.uk
Feedback and discussion

Dr Stuart Bloom
ibdregistry.org.uk
IBD Regional workshops also being held at:

CARDIFF Thursday 21st January
Chair: Dr Barney Hawthorne
TAUNTON Friday 22nd January

Chair: Dr Ian Shaw
BIRMINGHAM Friday 5th February

Chair: Prof Tariq Iqbal
DARLINGTON Tuesday 1st March

Chair: Dr John Mansfield
GLASGOW Spring 2016

Chair: Dr Ian Arnott
ibdregistry.org.uk
www.ibdregistry.org.uk
ibdregistry.org.uk
Your engagement and

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

IBDR Regional Workshop: London

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IBD REGISTRY

IBD Registry. All rights reserved

IBD Registry. All rights reserved

IBD Registry. All rights reserved

Welcome and introduc3on

Chair: Dr Stuart Bloom

The changing IBD landscape

How being part of the IBD Registry might help

Sister Kay Greveson

How to join the Registry

Workshop 1: Local priori3es and facilita3ng

Facilitated by Claire Munro &

4.10-4.30pm Tea break

Workshop 2: Solu3ons and ac3on plans

Facilitated by Claire Munro &

Key message development

IBD Registry. All rights reserved

Thank you to our sponsors

IBD Registry. All rights reserved

Where are we in the Registry journey?

Not sure which

Trying to get the

Using the PMS

Using the web

IBD Registry. All rights reserved

IBD Registry. All rights reserved

Pa#ents with Diagnosis

IBD Registry. All rights reserved

All other diagnoses

Treatment with single agent

Oral MTx only

IBD Registry. All rights reserved

All other diagnoses

AZA and ADA

Oral MTx and INF

Oral MTx and ADA

IBD Registry. All rights reserved

All other diagnoses

IBD Registry. All rights reserved

IBD Registry. All rights reserved

6. GP letter & patient summary examples: MDT letter

Out Patient Visit

The following investigations have been ordered: X-Ray Abdomen, Colonoscopy

These exciting developments come at a

IBD Registry. All rights reserved

IBD Registry. All rights reserved

The Changing IBD Landscape

IBD Registry. All rights reserved

Inammatory Bowel Disease (IBD)

Introduc9on to the IBD programme

Elements of work: IBD programme

Paediatric pa3ents included

Evidence of change: IBD programme

UC mortality rates have halved over 3 rounds of audit

Signicantly fewer readmissions for UC over 3 rounds of audit

Sites with at least some IBD nurse specialist provision

Sites with a designated Gastroenterology ward on site

Pa3ents entering remission (at rst follow up afer 12 weeks)

Number of adverse events reported by pa3ents (at any follow

Inpa9ent care audit

Biological therapies audit

All reports, slide sets, action plans etc can be

Total inpa3ents audited = 23,762

Where next for the IBD