You are on page 1of 43

The

IBD
Regist
ry As A
Tool
For
Resear
Keith Bodger
ch
Digestive Diseases Unit
Aintree University Hospital
Liverpool

Department of Biostatistics
Institute of Translational Medicine
University of Liverpool

My outpatient ‘activity data’ for
2014

Information,
combined with
the right support,
is the key to
better care,
better outcomes
and reduced
costs
2011

Real world
It is increasingly
data

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.

Standard F
A service that
is knowledgebased and
actively
supports
service
improvement
and clinical
research

Maximising the value of the UK IBD
Registry for service delivery, audit
and research

Develop and test
new ways to
analyse routine
administrative
NHS data and
explore the
potential of
linkage to IBD
Registry dataset

Engage with
stakeholders
to ensure
analyses and
reports are
relevant to
their needs

Routine Administrative Data
(Hospital Episode Statistics)

Routine Administrative Data
(Hospital Episode Statistics)
A&E
A&E
Attendance

OPD
Outpatient
Activity

APC
Admitted
patient care

Analysis

Developed algorithms
to classify ALL care
episodes recorded for
the local IBD cohort
(all-cause activity)

Relevant
emergency
admissions
“missed”
by focusing
on primary
diagnosis
alone

X

My outpatient ‘activity data’ for
2014

Hospital Episode Statistics


Inpatient & Daycase Episodes
Outpatient attendance
Accident & Emergency attendance

Minimum dataset

Hospital Episode Statistics

 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
 Date of starting biologics
 Admissions
 Surgery

Inpatient & Daycase Episodes
Outpatient attendance
Accident & Emergency attendance

Minimum dataset

Hospital Episode Statistics

 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
 Date of starting biologics
 Admissions
 Surgery

Inpatient & Daycase Episodes
Outpatient attendance
Accident & Emergency attendance

Key events relating to IBD patients commencing
biologics
2004/
05

2005/
06

2006/
07

2007/
08

2008/
09

12
months Date of 1st infusion visit
Screeni
ng

3 months
12 months

2010/
11

2011/
12

2012/
13

2013/
14
12
months
Follow
up

30 days

2009/
10









All-cause admissions (Emergency, Elective, Day
case, Other)
Primary diagnosis and any co-morbidities
Emergency admissions for IBD care (with or
without surgery)
Major surgical resection (e.g. Colonic, Small
bowel)
Minor surgery (Perianal procedure)
Infusion visits
Endoscopies
OPD visits ( e.g. by specialities, consultant)
A&E (all-cause) attendances ( Admitted/ Not
admitted)
In-hospital mortality

Emergency admissions in patients commenced on
biologics
(year before versus year after the start date recorded in the registry
system)

n=38
patients

Research
Designs

Registry and Research
• Standardized, structured dataset
• Tools (PMS or WebTool) to collect the data electronically
• Any hospital with an internet connection!
• Secure data warehousing
• Consent model for secondary uses (+/- project-specific)
• Local export for investigating sites to analyse their data
• Developing analytical methods (data  information)
• Developing linkages to external data (HES)
• Application and funding model to be formalized
• Proof-of-concept studies are in progress