You are on page 1of 47

Maximising the value of the IBD Registry for

service delivery, audit and future research

DR KEITH BODGER
1. Local data entry systems capable of capturing a common core registry dataset

Exis8ng EPRs PMS Web Tool


(if registry-compliant) (pa8ent management system) (web-based pa8ent management tool)

Local EPRs and databases InfoFlex or EMIS PMS Web-based tool (Infoex)

. Standardised data submission


rom local systems to NHS Digital

Registry Dataset
Demographics
Consent Op=ons 3. Central data processing
Diagnosis Pseudoanonymiza8on
Contacts (e.g. OPD visits) Annual linkage: Registry cases to HES
Disease Classica=on HES-only cohort (ICD-10 coding)
Disease Scores
Medica=on
Biologics (KPIs)
Surgery
Cancer
Admissions

4. Analy8cs & Repor8ng


Service Delivery
Audit & Quality Improvement
Future Research
Overview

Data Processing
Registry data
Clinical algorithms HES data and linkage to Registry data
Metrics
Reports
Other sources of data
Visualisa8ons

Analy8cal Hub
Analy8cal Hub
Data Processing
Service Delivery
Clinical algorithms
Metrics
Reports
Audit & QI
Visualisa8ons

Future Research
Focus on
Data Processing
Clinical algorithms
Metrics

Biologics
Reports
Visualisa8ons

Analy8cal Hub
Overview

Data Processing
Registry data
Clinical algorithms HES data and linkage to Registry data
Metrics
Reports
Other sources of data
Visualisa8ons

Analy8cal Hub
gistry Dataset
ographics
sent Op=ons
nosis
acts (e.g. OPD visits)
ase Classica=on
ase Scores
ica=on
ogics (KPIs) Anonymized
ery
er
issions
Growth of the IBD Registry
100 30,000

90
25,000
80

70
20,000
60

50 15,000

40
10,000
30

20
5,000
10

0 0
May-15 Oct-15 Jan-16 Apr-16 Jul-16 Sep-16 Nov-16 Dec-16 Jan-17 Feb-17 Apr-17

Total records submi]ed NHS Digital registra=ons Live sites Sites submi_ng data

n=5,468 24,633
June 2015 March 2017
Growth of the IBD Registry

*Age at =me of the registry download (March 2017), derived from month and year of birth
Growth of the IBD Registry
Age at the 8me of diagnosis
Growth of the IBD Registry

Types of Event (contacts) Date of Events (contacts)


30000 70.00%

60.00%
25000

50.00%
20000

40.00%

15000

30.00%

10000
20.00%

5000
10.00%

0 0.00%

March 2017
Longitudinal Capture of Events and Outcomes
(Data from Denominator sites)
Longitudinal Capture of Events and Outcomes
(Data from denominator sites)

Trust A

Harvey Bradshaw Index (mean)

1,030 pa=ent years of serial follow-up


Average number of visits per pa=ent = 3
Average =me interval = 52
Crohns disease: Classica8on

Loca=on Behaviour

n=9,455 n=9,061

minal Ileum +/- limited caecal disease Colonic Ileocolonic Other Non-stricturing, non-penetra8ng Stricturing Penetra8ng
Prescribing: Biological agents

Adalimumab Golimumab Inectra


Remicade Remsima Vedolizumab

n=2,060 prescrip=ons in the drugs or biologics le (March 2017 download)


Focus on
Data Processing
Clinical algorithms
Metrics

Biologics
Reports
Visualisa8ons

Analy8cal Hub
Biological Audit Data Items

Induc=on Maintenance

0 3 12
Pre-Rx screening Review Review
Disease ac8vity score Disease ac=vity score Disease ac=vity score
Biological Audit Data Items

Induc8on Maintenance

0 3 12
Pre-Rx screening Review Review
Disease ac=vity score Disease ac8vity score Disease ac=vity score
Biological Audit Data Items

Induc=on Maintenance

0 3 12
Pre-Rx screening Review Review
Disease ac=vity score Disease ac=vity score Disease ac8vity score
Induc=on Maintenance

0 3 12
Pre-Rx screening Review Review
Disease ac8vity score Disease ac=vity score Disease ac=vity score
Induc=on Maintenance

0 3 12
Pre-Rx screening Review Review
Disease ac8vity score Disease ac=vity score Disease ac=vity score

1 (Basic Repor8ng of KPIs All par8cipa8ng sites)


minimum data
KPIs for biological audit

Biologics events with Ini8a8on 3 months 12 months Number of


disease ac8vity assessment events review review Pa8ents

1713 585 1128 0 501


52 13 39 0 27
135 103 5 29 109
28 21 5 5 20
78 50 25 5 47
5 5 0 0 5
330 330 0 0 206
720 221 499 0 323
154 76 78 0 67
42 18 22 5 21
14 14 0 0 14
5 5 5 0 5
5 5 0 0 5
109 40 69 0 45
50 33 14 5 37
al 3433 1511 1883 39 1424
March 2017
Induc=on Maintenance

0 3 12
Pre-Rx screening Review Review
Disease ac8vity score Disease ac=vity score Disease ac=vity score

1 (Basic Repor8ng of KPIs All par8cipa8ng sites)


minimum data

2 (Extended Repor8ng Selected sites)


data captured within local registry systems
gistry use embedded into rou=ne prac=ce
vice developments (e.g. local biologics service support)
w audit standards (extra KPIs) or QI ini=a=ves
search studies (e.g. VEST)
st-marke=ng surveillance
=ent portal or apps
Growth of the IBD Registry

Types of Event (contacts) Date of Events (contacts)


30000 70.00%

60.00%
25000

50.00%
20000

Not much data captured 40.00%

15000
for inpa8ent events 30.00%

10000
20.00%

5000
10.00%

0 0.00%
Overview

Data Processing
Registry data
Clinical algorithms HES data and linkage to Registry data
Metrics
Reports
Other sources of data
Visualisa8ons

Analy8cal Hub
Hospital Episode Sta8s8cs

All pa=ents coded with IBD over last decade


Plus Registry pa=ents (excluding opt-outs)
10 years of all-cause events belonging those pa=ents
Over 300,000 pa=ents
A&E

EMERGENCY OPD DAYCASE OPD

OPD

DAYCASE
OPD DAYCASE
DAYCASE
OPD Start Drug

A&E

OPD
OPD DAYCASE OPD ELECTIVE
Front line feedback: Your views
Emergency Admissions: IBD-Specific diagnosis*
Annual Report: St Elsewhere NHS Trust (Source: HES 2013/14)

Ulcerative colitis Crohns disease

39 47
Emergency Admissions Emergency Admissions

19 20 18-81 155 days 20 27 18-80 263 days


400
CD In Primary UC In Primary Q1 Median Q3
300

200

100

St Elsewhere

y admissions with an IBD-specic primary diagnosis (ICD-10 code). Gender split, age range and total emergency bed-days are presented. The bar chart shows workload data for all English Trusts that par=cip
f the UK IBD Audit, ordered highest to lowest. The horizontal lines represent the na=onal median and interquar=le ranges. The workload data for St Elsewhere is highlighted.
Emergency Admissions: IBD-Related diagnosis*
Annual Report: St Elsewhere NHS Trust (Source: HES 2013/14)

Ulcerative colitis Crohns disease

40 61
Emergency Admissions Emergency Admissions

22 18 18-87 168 days 30 31 18-77 245 days

300
CD-Related UC-Related Q1 Median Q3

200

100

St Elsewhere
admissions where the primary diagnosis code was a symptom/sign, condi=on or complica=on that could relate to IBD or its treatment. Examples would include symptom codes (e.g. abdominal pain) , specic
ns (e.g. perianal abscess) or other relevant GI or systemic diagnoses. This is a very broad basket of codes to capture a wide range of unplanned admissions for known IBD cases. All these admissions had an IBD
ed as a secondary diagnosis. Gender split, age range and total emergency bed-days are presented. The bar chart shows workload data for all English Trusts that par=cipated in the last round of the UK IBD A
hest to lowest. The horizontal lines represent the na=onal median and interquar=le ranges. The workload data for St Elsewhere is highlighted.
Emergency re-admission within 30-days*
Annual Report: St Elsewhere NHS Trust (Source: HES 2013/14)

Ulcerative colitis Crohns disease

6.1% 5.2%
Emergency Re-admissions Emergency Re-admissions

IBD (UC and CD combined)


Average 2SD limits 3SD limits
Emergency Re-admission Rate

25 St Elsewhere

20

15

10

0
0 100 200 300 400 500
Emergency Admissions with IBD-specic or IBD related diagnosis

re-admission within 30-days of discharge. The index admission has an IBD-specic primary diagnosis recorded. Re-admissions were either an IBD-specic or a related diagnosis in primary posi=on.
hart shows pooled readmission rate for all IBD-specic emergency admissions. These are unadjusted crude data (no casemix adjustment) and require careful interpreta=on.
Your Views: Recent Survey
Your Views: Recent Survey
Your Views: Thank You!
This would provide invaluable
s is vital to our IBD service and informa4on for our IBD Service
going management of our and annual report
4ents on biologics

I like the pictorial


representa4on of the
a good idea to catch the data
non-primary diagnosis
Focus on
Data Processing
Clinical algorithms
Metrics

Biologics
Reports
Visualisa8ons

Analy8cal Hub
ey events before & aier ini8a8on of an8-TNFs for Crohns diseas

2004/05 2005/06 2006/07 2007/08 2008/09 2009/10 2010/11 2011/12 2012/13 2013/14

12 Drug start date 12


months months
Screening Follow up

All-cause admissions (Emergency, Elec=ve, Day case, Other)


Primary diagnosis and any co-morbidi=es
HES Emergency admissions for IBD care (with or without surgery)
or 30 days Major surgical resec=on (e.g. Colonic, Small bowel)
Minor surgery (Perianal procedure)
gistry Infusion visits
3 months Endoscopies
OPD visits ( e.g. by speciali=es, consultant)
12 months A&E (all-cause) a]endances (admi]ed/ Not admi]ed)
In-hospital mortality
Monitoring unplanned care and surgical events for Crohns disease pa8ents treated wi
biologics in England: Linkage of rou8ne administra8ve data and UK IBD registry

HES Cohort (n=15,399) Registry Cohort (n=217) 2,02


Monitoring unplanned care and surgical events for Crohns disease pa8ents treated wi
biologics in England: Linkage of rou8ne administra8ve data and UK IBD registry

Specic events in the year before and aier star8ng biological therapy
40

2,022
37

35
Registry Cohort (n=217)
30

25
22

20

15
12 12
11
10
10
7
6
5

0
Admissions with Drainage of Fistulotomy-Fistula Seton Inser8on
Ano-Rectal Perianal abscess repair-
condi8on Rectovaginal stula
procedures

One year Before One year Aqer


Monitoring unplanned care and surgical events for Crohns disease pa8ents treated wi
biologics in England: Linkage of rou8ne administra8ve data and UK IBD registry

Surgical events and emergency admissions for infec8on-related diagnoses in the year aier
star8ng biological therapy (categorized by treatment dura8on)
600
12%

500 HES Cohort (n=15,399)

400 3.6%

300 n=15

200
1.7%

100 1.3%

0
Stopped Group Maintenance group

Surgery Infec8on-related admissions


Overview

Data Processing
Registry data
Clinical algorithms HES data and linkage to Registry data
Metrics
Reports
Other sources of data
Visualisa8ons

Analy8cal Hub
External Sources of Data: IBD Audit Reports
Inequality of provision of inflammatory bowel disease nurses across England: Correlation with metrics of
unplanned hospital care for adult services
Mustafa Shawihdi* 1, Andrew Kneebone 2, Keith Bodger 1, 2
1Department of Biostatistics, Institute of Translational Medicine, University of Liverpool, 2Gastroenterology Dept, Aintree University Hospital, Liverpool, United Kingdom
Funded by a Health Services Development Award from:

BACKGROUND RESULTS RESULTS


Despite better IBD nurse provision in the UK, national audit suggests Provision tends to increase with higher burden of unplanned care
only 48% of patients admitted as an emergency are seen by a specialist at site level, but only with modest correlation between IBD-N Geographical distribution
nurse.(1) An estimated 100,000 people with IBD don't have access to (FTEs) and IBD-specifc Emergency Bed Days, r=0.55 (p<0.001).
an IBD nurse and 63% of services don not have enough IBD nurse to This masks a high degree of site variability. Annual IBD-related
meet the needs of everyone affected.(2) Duties in elective services Emergency Bed Days ranged from: 286-1736 for sites with Zero
may compete with the availability of an IBD nurse to support FTE (n=16 hospitals), 243-2295 for sites with 1 FTE (n=38) and
hospitalized patients. Although data is available for basic levels of IBD 438-2699 for sites with 2 FTE (n=22), equating to between six,
nurse provision, there is no published information relating current nine and six fold variation in unplanned bed days at a given level
levels of staffing to emergency care workload. of nursing provision. We did not find a correlation between FTE
and a simple site-level process measure (e.g. crude 30-day
readmission rate; r=- 0.11, p=0.21) but further metrics will be
evaluated.

4500

4000

3500 r = 0.55
R = 0.3037
Emergency Bed Days

3000 P<0.001

2500
METHOD
Data sources: (a) UK IBD Audit: Hospital data for IBD nurse provision, 2000

expressed as Full Time Equivalents (FTE) reported in organization audit


1500
for Dec 2013 (3); (b) Hospital Episode Statistics for England (2013/14):
relating to all cases coded with an IBD specific code, including their all- 1000
cause hospitalizations. Site mapping: Hospital sites participating in
audit were mapped manually to organizational site codes available in 500

HES, matching 140 hospitals. Data Analysis: For HES data, algorithms
based on admission method, coded diagnoses and procedures were 0
-1 0 1 2 3 4 5 6
used to categorize admissions, extracting a series of metrics including IBD Nurse Provision (FTEs)
annual counts and total emergency bed days for IBD-related CONCLUSION
emergency admissions, aggregated at site level. Provision of IBD-N is not matched to unplanned care
REFERENCES workloads for English hospitals. The emergency bed days
We generated a map using GIS software to locate those hospitals that 1. Royal College of Physicians. National clinical audit report of inpatient care
for people with ulcerative colitis: adult national report. UK IBD audit. falling within the potential remit of an individual IBD-N may
participated in the organisational audit, and geo-mapped the vary as much as nine fold between different hospital sites.
London: RCP, 2014.
approximate geographical distribution for emergency admissions 2. https://www.crohnsandcolitis.org.uk/get-involved/campaigning/more-
(based on Middle Super Output Area of residence - there are 6,791 ibd nurses-better-care-campaign#sthash.79awqrIJ.dpuf
ACKNOWLEDGMENT
MSOAs in England, each with a population of 5,000 to 15, 000). The 3. Royal College of Physicians. National audit report of inflammatory bowel The authors would like to thank Dr Pete Dixon from the
map is shaded in quintiles from lowest (bright green) to highest (deep disease service provision: adult national report. UK IBD audit. London: RCP, department of biostatistics, University Of Liverpool for his help
green) according to absolute count of bed days for each MSAO. 2014. and involvement in mapping IBD nurse provision in England
Analy8cal Hub
Data Processing
Service Delivery
Clinical algorithms
Metrics
Reports
Audit & QI
Visualisa8ons

Future Research
Future Registry-based research

Governance and Consent


Data Processing - s251 (service delivery, audit, quality improvement)
Clinical algorithms - Registry Consent
Metrics - Project Specic Consent (e.g. VEST)
Reports
Tools to smooth the path from research ques8on to research result
Visualisa8ons - Applying algorithms to raw registry data and crea=ng a dataset
that is ready to be sta=s=cally analyzed requires several
challenging data transforma=ons
- O-the-shelf tools do it once
Analy8cal Hub
Health Services Development Award
Conclusions

Analy8cal Hub
Data Processing
Service Delivery
Clinical algorithms
Metrics
Reports Tools to
Audit & QI
Visualisa8ons enhance the
value of the registry
Future Research
Acknowledgements

Dr Mustafa Shawihdi (funded by CCUK)


Dr Susie Dodd
Dr Pete Dixon
Prof Mike Pearson
Prof Paula Williamson