Post on 03-Apr-2018
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The UK IBD Registry: coming yourway soonStuart Bloom on behalf of the IBD Registry Board
DDF, Liverpool 19 June 2012
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The UK IBD Registry
What is it and what is it for?
Is it any use to you?
Are you interested in finding out more?
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Aims of the registry
To develop a central (anonymised) dataset of IBDpatient records that can be accessed for prospective
audit and research, in order to:
Drive continuous improvement in patient care &access to care across the UK
Provide local regional & national data in order to
better define the pattern of colitis and Crohns
disease Improve understanding of long term outcomes Inform commissioning and service design Support IBD research
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DATA ENTRY AT POINT OF
CLINICAL CONTACT
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IBD registry board members
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Aims of the registry (2)
By 2013, develop a means of capturing clinical &operational data for all patients with IBD at the point
of clinical contact, which:
Has local utility to clinicians Improves information for patients Allows local analysis & benchmarking to support
service development & improvement Links with IBD Standards and future rounds of IBD
audit
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IMPROVEMENT
(pseudo)anonymisation
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Barriers to a centralised IBD registry
Most IBD Services do not have an IBD database or
the resource to create and maintain one
There are several different IBD database systems
none that are fully implemented in a significant
number of centres
Double-entry of data on a routine basis is
unacceptable
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Reasons NOT to not join a registry
Outpatients is about survival
Data is not secure
Benefit does not justify time
No money
Another white elephant
Life is too short
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Reasons to join the registry?
Easier to monitor and improve quality
Allows you to measure your performance against
the national IBD StandardsFacilitates benchmarking your service against the
national performance
Links with IBD AuditData is secure
Complies with Information Governance standards
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Potential solutions
Proposal: a number of options for entering data to
suit local conditions and resources:
Option 1: existing databases can feed their data
into the central registryOption 2: web portal option
Option 3: IBDR patient management system
provided by InfoFlex with additional functionality
Choice of levels of participation with all options
the mandatory dataset contains only 8-10 fields
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Data to drive
Improved IBD quality
outcomes
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Familiarity
Ease of data upload
Data retention
No cost to Trust
Data entry 1: existing systems
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Data entry 2: web portal
Functionality similar to Biologics Audit
No cost to Trust
Links to: IBD Standards, patient information sites
and other resources
Allows you to print summary documents at the
end of the consultation:
Patient care plan
GP letter
Data can be fed in to the UK IBD Biologics Audit
automatically
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Data entry 3: patient management system
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Progress to date
oney raised through pharma and private donors
nough to see project through to end year 2012, with
plans to extend to 2014
oard convened, project manager hired
subgroups:IT/governanceClinical groupIT group
uropean tender for patient management system and
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Registry partner: CIMS (InfoFlex)
Existing IBD system
PAS links with 60 sites
Contract to deliver
Registry
PMS
Web portal
Links to legacy systems
Pilot sites
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PMS
Built by InfoFlexDesigned by working clinicians to be simple and easy
to useCan be integrated with local PAS and pathology
systemsPatient summary visualises characteristics of patients
disease at a glance, saving time leafing through notesLinks to: IBD Standards, patient information sites and
other resources
Allows you to print summary documents at the end ofthe consultation:Patient care planGP letter
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PMSData can be pulled off easily e.g.Service reportsLists of patients taking particular treatments, e.g.
biologics, azathioprine etcMonitoring and screening lists
Clinical auditBusiness cases to demonstrate the impact of your
service, and make the case for additional nurse postsAnonymised outcomes data for commissioners
Data can be fed in to the UK IBD Biologics Auditautomatically
Research modules can be added
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Benefits to cliniciansRemoves the need for paper notes
The patient summary/ timeline visualises the characteristics of the
patients disease at a glance, saving time leafing through notes at the
start of the consultation
The system makes all the relevant clinical information available at the
right time, reducing the potential for error
Collates information and other online resources so theyre easy to
access:
IBD Standards
Allows you to print summary documents at the end of the consultation:
GP letter
Research modules can be added, to minimise the number of different
systems you need to access
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Benefits to patients
Better information for patients
Patient care plan
Links to Patient information sites and other resources
Potential for patient entry of PROMs
Potential link with primary care
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Benefits to trust/comissionersData can be pulled off instantly without the need for analyst
support, making it easy to prepare reports and saving time. Forexample:
Service reports
Lists of patients taking particular treatments, e.g. biologics,
azathioprine etc
Monitoring and screening lists
Clinical audit
Business cases to demonstrate the impact of your service, and make
the case for additional nurse posts
Anonymised outcomes data for commissioners
Data can be fed in to the UK IBD Biologics Audit automatically
Anonymised data is automatically fed into the National IBD
Registry