IBD Registry Presentation DDF June 2012

7/28/2019 IBD Registry Presentation DDF June 2012

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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

Documents

IBD Registry Presentation DDF June 2012